MATT OELFKE
People With MS and the Courage to Give
Chapter 18: A Box to Put My MS In
DEALING WITH MS is a lifelong challenge, and I refuse to succumb. I want people to know that MS is only a single part of our lives, one that we cannot allow to rule our lives. We all have to remember one thing: we have MS but MS does not have us.
Being diagnosed with MS is hard to deal with at any age, but at age twenty-five my diagnosis was especially difficult for me. I had recently injured my back from a ten-foot fall at my construction job. Eighteen months later, my back problems, along with emerging MS symptoms including double vision, body pain, difficulties in controlling my bladder and walking, and numbness, kept me from working altogether. This made my wife, who was at the time pregnant with our first child, the sole financial supporter of the family.
I felt so helpless, I was just ready to give up. Here I had gone from working in a profession that relies on strength and stamina to living with a disease that left me barely able to walk. But I began to think about my unborn child and remembered a promise I had made to myself when I was young: to be a responsible father and raise my children well. This was a promise I intended to keep. I simply couldn’t let MS control my life.
Like all expecting parents, I started to “baby proof” our home, which meant, among other things, safeguarding all my syringes, needles, alcohol wipes, and medicine for my injections, so they would be out of our newborn’s reach. Plus,
I thought it would be better to have these things out of sight; otherwise they would be a constant reminder of my disease.
To store them safely, I built a wooden box with several compartments, including a space to prepare the injections. Then I decided to decorate the box with pictures of my family to make it pleasant to look at as well as functional. Now when I need my supplies, I always get to see a picture of my son, Joey, with his smiling and happy face.
I deliberately designed the box so that it would be as easy as possible to give myself my shots. In the upper part of the box, in the left hand corner, is a space to store used syringes. Next to that is a place for unused syringes, so they’re always ready for my next shot. In the lower part of the box, there is space for alcohol swabs and anything else I wish to store there. The front of the box, when it is lowered, provides a tray, which lies flat on a table to prevent anything from rolling off. That way I’m able to take out all the supplies I need and have them right in front of me in one place. When I’m finished giving myself an injection, I can put the used needle in the storage container, close the tray, put the lid down, and I’m done. Having the box gives me both physical and emotional distance from MS. When I leave the box, my MS stays there.
After seeing my box, a fellow MS support group member was so impressed that he asked me to make one for him. Quickly, news about the box began to spread, and a local newspaper reporter asked me for an interview. After the story appeared, I received $6,000 in anonymous donations and numerous little notes of inspiration from MS communities—local and national—asking me to make more boxes.
I could see that making boxes gave me the perfect opportunity to share my experience with other people with MS. Demand has been so great that a manufacturing company now mass produces the boxes. A portion of the proceeds
from the sale of each box is donated to MS research. After receiving a grant, I purchased fifty boxes made to distribute to low-income MS patients in my home state of Michigan.
My wife and I are now the proud parents of two children, Joey and Casey. I continue to fulfill that childhood goal of being a good father and a loving husband. Because of my disease, however, I’ve added another goal: to be a source of motivation to others living with MS. The box has given me a chance to meet this objective.
I hope that my boxes—whether used for storage or as a psychological barrier from the disease or both—will be a source of inspiration for other people with MS.
For more information about the MS Box, log onto www.theMSbox.com.
