Book Excerpt:

My MS Journey: Recalculating

A Memoir by Judith Krum

Some people say that to tell a story well, one should start at the beginning. I have decided to begin with the turning point. I’d been forced to recalculate many times in my life before being diagnosed with Multiple Sclerosis, but MS took recalculation to new levels, physically, mentally, and emotionally.

It was first the heat I experienced in England at Kew Gardens when all I could do was drag myself around from bench to bench. And then, after I had been home for a few months, I woke up one morning in 1986 and was blind. All I knew was that I could only see one tiny peep hole through a curtain of black. I had to move the scene or the reading material or the tv show or the person’s face if I wanted to see even a tiny, tiny bit of it in that one miniscule peep hole, the size of a mustard seed. I was scared; I was horrified and desperate. No more driving; no more reading; no more writing. I would learn Braille.

At that time I was working as an English teacher and Guidance Director in a small high school in Vermont. Since I had been there since 1974, I knew my way around and, thank God, the students knew me well. Because my house was on her way to school, my colleague Nicky was able to pick me up and head to school, about a 20 minute drive.

When Nicky dropped me off back home after school, I called my ophthalmologist, who sent me to Dr. Edwards, who would become my neurologist for the next 30 years.  Dr. Edwards examined me and said that I had developed Optic Neuritis, which could be one of the first symptoms of Multiple Sclerosis. My questions and my concerns poured out.  Would I be totally blind? Would I be paralyzed? Would I die? Was there a cure?  Medications? Tests? What was next?

Dr. Edwards sent me to Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire, for diagnostic testing including an MRI. Indeed, when the results came back they showed the typical MS lesions in the brain and spinal cord. Although the exact cause of multiple sclerosis is unknown, it is believed to develop when the immune system mistakenly targets the substance covering the optic nerve (or other nerves) resulting in inflammation and damage to the myelin sheath. Normally, the myelin helps electrical impulses travel quickly to the brain, where the impulses are converted into visual or other information. Optic neuritis disrupts this process, affecting vision. These scarring lesions occur when the myelin is eaten off the nerves, causing disruptions in the electrical connections of the nerves. This is why each case of MS is different – because the disruption of nerves is different with each person.

At this point I didn’t know what would come next. Uncertainty and deep anxiety set in.  Periods of weeping, of silence, of seeking the stories of others who had experienced similar conditions. Because I was sure I would remain blind, I began to research the programs and resources that were available to blind people. Could I learn Braille?  Could I access books on tape? Could I afford to hire a driver or personal assistant? So many questions. So much to learn.

It seemed I didn’t have time to feel sorry for myself; there was too much to do, and with limited sight, these tasks took so much time. With my one tiny peephole of sight, it took me hours to read just one page of text. And to accomplish this, I had to place the text on a well-lighted, flat surface just below my nose, slowly moving the text letter by letter and then mentally putting the letters together to make words and then sentences and then paragraphs. How long could I continue this way, trying to maintain my job as teacher and counselor, depending on colleagues for transportation?

My students were wonderful. They took me under their collective wings and helped me at school to get where I needed to be. They never took advantage, no practical jokes leading me to the wrong room or telling me incorrectly who was in the room or what time it was not! My blind life continued for about six weeks, and then, as unexpectedly as it had begun, the blindness disappeared. It just went away, completely. It was a miracle!  I could see again. I looked at text. I was able to read just like nothing had ever happened. No tiny peephole to see through. I went outside and could see the trees and the flowers and the cars going by the house. I got my car keys to open my car.  I sat in the car for at least a half hour, sobbing with relief, and, I think, waiting for the blindness to return. But it didn’t. I was astounded.

I called Dr. Edwards and asked him what had happened. He explained that the disappearance of blindness due to optic neuritis is typical after a few days or weeks or months. He reassured me that I would be ok and set me on a program of medications and therapy designed to build up my energy and try to slow the progression of the MS. In people with optic neuritis, the chance of developing multiple sclerosis after one episode of optic neuritis is about 50% over a lifetime. The risk of developing multiple sclerosis after optic neuritis increases further if an MRI scan shows lesions on your brain. So I was one of the lucky ones – both an episode of optic neuritis and an MRI that showed lesions on the brain. Dr. Edwards told me that there might be additional MS symptoms that would develop, things like foot drop, gait impairments, weakness, fatigue, cognitive disruptions, bladder and bowel symptoms. All of these symptoms would depend on which nerves were being attacked.

After the diagnosis of MS, Dr. Edwards began to prescribe a number of new medications that were designed to slow the progression of MS. Over the years I have injected my thighs with Betaseron and have had injections of Avonex, either at the doctor’s office or by my husband who was trained to administer those shots at home. I also had infusions of the steroid Solumedrol, usually every four months, in Dr. Edward’s office. Solumedrol stimulated my nerves and was helpful in keeping me fairly active. My best friends became my physical therapists.

By 1990, MS had become part of who I was. My legs weakened. I was experiencing more foot drop of the right foot. I first used a cane for balance. Then I started using a Canadian crutch, a height adjustable crutch with an upper arm support cuff, which worked for several years as I maintained upper body and arm strength and mobility. I used one crutch on the right side so the crutch compensated for my lack of strength of the right leg. Dr. Edwards prescribed a plastic orthotic for my right foot to help with foot drop that caused me to catch my foot on uneven terrain and cracks in pavements.  Once the orthotic was made I had to figure out how to get my two differently sized feet into shoes. I have large feet to begin with (in 6th grade I could wear my mother’s size 9 shoes) and now I had not only size 11feet, but size 11 triple wide for my right foot.  I couldn’t afford to get two different sizes of every pair of shoes so I had to figure out how to make the triple wide left shoe smaller to fit that foot with no orthotic. How many kinds of Dr. Scholl’s shoe pads are there? Well, I know of at least 15, all of which I tried in varying combinations in my left shoe to take up the slack space so that the shoe would stay on my foot. I tried massaging gel insoles, 16-hour insoles, air pillo insoles, dream walk fuzzy insoles, and many more.

With all of this catoodle, gone were the days of high heels and looking grown-up and in charge. I had re-entered the era of Mary Janes and tied sneakers. I had a pair of raspberry suede heels that I had purchased back in 1973, and I refused to get rid of them. They were my very most favorite shoes, and I kept them until 2001. Just in case. In case of what? In case I suddenly no longer needed an orthotic.  In case my legs were no longer weak. In case I could dance again.

In case. In case. In case. I was so angry. It just wasn’t fair!! I just was not ready to see myself as a person with a disability. For more than half my life I had lived life as a non-disabled person, TAB (temporarily able-bodied). Growing up and getting started on a career as a teacher prepared me for life as a non-disabled adult. I was not ready to give all that up. I was privileged, educated, financially comfortable, now married to a man who loved me and whom I loved. I had a wonderful job, terrific colleagues, students who were willing to learn and who responded to challenges.  And now it seemed all that was for naught.

As a guidance counselor I had learned about the state division of Vocational Rehabilitation and figured that instead of telling students about Voc Rehab, I would see for myself what it was all about. The mission of Voc Rehab is to keep people working, no matter their disabilities. I felt very awkward going to the VR office to speak with a VR Counselor. Wasn’t that what I was supposed to do? To help other people figure out their goals and how to achieve them? Things were just backwards. The counselor and I determined that one of my most pressing concerns was the issue of transportation.  Unlike major urban areas that have bus service, commuter trains, and other transportation infrastructure, southern Vermont does not have such possibilities available. The automobile is key to getting around on Vermont’s two-lane roads.

So Vocational Rehabilitation sent me to a driving school in Albany, NY, where I was to learn to drive using only my left foot. I had never heard of a “left foot accelerator” but that was just one of the new things that would help me to keep working as long as possible. I had been driving for more than 20 years and now, at age 40, I found myself a student again. With the driving instructor in the passenger seat, I got into the driver’s seat and surveyed equipment. The car was a Honda Civic similar to my car. It had two pedals – one was the brake and the other was the accelerator. The accelerator was outfitted with an extra pedal to the left of the original gas pedal and connected to the original pedal with a galvanized rod. I was being instructed in driving skills so I could keep my license and my employment. My instructor gave me confidence and assured me that in time, I would become very comfortable with my left foot accelerator. But it definitely took a great deal of concentration as I remembered that I was driving with my left foot. I could not keep up a coherent conversation while I was driving with my left foot.  After a few sessions on an instructional car, the left foot accelerator was installed on my car. And from that time forward, I was driving with my left foot.

I had to drive from Albany, N.Y., back to Vermont, a distance of about 35 miles. It was do or die! And I wasn’t about to die so I had to do it. Concentration. No music on the radio. No conversation with my husband who had accompanied me. Nothing to distract me from remembering that my left foot was doing its job. From that time I continued teaching for another 20 years. And by the time I officially retired I was using a manual wheelchair that I was able to lift into the hatchback of my car. My MS journey has surely had its ups and downs and has required recalculating many times. I have been at varying times depressed, optimistic, angry, joyful, vulnerable, and happy.  I have never been bored.