Jan: one story, many truths.

It was late August, 1990 and everything in my life was wonderful. I had just attended a great Michael Bolton/Kenny G concert with my sister Joanne. Serenaded by our favorite tunes in the summer night air, we sprawled on the Great Woods lawn and talked about everything sisters do, including my family's upcoming trip to Disney World in October. My husband and I had saved for Florida for the past three years, deciding that at six years of age, our son Timothy would be old enough to handle all the excitement along with our daughters Sharon, 11, and Suzanne, 13.

I had so much to be thankful for... happy, healthy children, a nice home and my loving husband, Harry, my best friend. I loved my job as a school nurse at the Arlington Children's Center. School was soon back in session and I looked forward to a happy but hectic pace between home, work and volunteering as co-vice president of my son's elementary school Parent-Teacher organization.

Unfortunately, I began to feel rather listless, noticing a heaviness in my arms and legs. I also suspected a brewing urinary tract infection with an annoying frequency and no control. Over the years, I had been hampered with various health problems- weakness, numbness and "pins and needles" in a migratory fashion in my arms, legs, face and trunk, all symptoms waxing and waning with no rhyme or reason. Neurology consultations had revealed hyperactive reflexes and altered sensations with doctors concerned but no definitive conclusions reached.

I really felt terrible but was determined not to miss Suzanne's debut as a high school majorette at the season's opening football game. We proudly watched her perform at the half time festivities then left the stadium. I was hospitalized the following day. After many consultations with the hospital's radiologist, urologist, gastroenterologist and neurologist, my personal physician, whom I've known for many years, gently broke the news to me. It was their collective opinion that given my current symptomatology and my significant past medical history, my course was most consistent with multiple sclerosis! I'll never forget the next few days, sobbing uncontrollably at times while trying to master personal intermittent catheterization to maintain proper bladder and kidney functioning. Once discharged, I still had to brace for a battery of more sophisticated tests and a maze of machines.

Just two weeks before our flight south we had to cancel our long-awaited family adventure. Our children were devastated. Talk about guilt! Though I knew it was out of my control, I felt I'd spoiled everything, crushing their dream.

With my physical health upside down (a totally separate entity from the MS, I required shoulder surgery in August, 1991), my emotional state wavered. While I tried very hard to rise above it all, a depression seemed to keep dragging me down. Always being a very active, involved wife and mother, I now felt like a "shadow" of myself. Physical and occupational therapy were certainly beneficial but I longed for my old life back, my life of swimming and sledding with the kids, organizing our school's fund raising potluck suppers and chaperoning classroom field trips with other parents. Now my life seemed so narrow, so self-serving. I hated what had become of me.

Because of my difficulty in gait and balance, I had to rely on a cane to support the unsteadiness. I was fitted for an AFO, ankle foot orthotic, which is a plastic brace molded to fit the leg to assist in providing additional support. We needed to purchase a wheelchair as I no longer could navigate long distance walking. At first, my pride interfered with my decision to accept these devices but I now see these aids as my renewed freedom, a ticket to restored mobility and a more normal family life.

It was hard for my children to see so many changes in our lives. It nearly broke my heart one day when Tim grabbed my cane, refused to give it back, and cried, "no other Mommy needs one of these so why should mine." We tried to explain that as some people need glasses to see, a hearing aid to hear, I needed the cane to walk. He became moody, clingy and sometimes aggressive. One evening while tucking him into bed, I sensed he had something on his mind. It took patience and love but he was finally able to voice his fears and expressed his concerns that I was going to join his Nana in heaven soon. I tried to reassure him the best way I knew while fighting back stinging tears. It was so much for a 6-year-old to worry about! For our daughters, normal teenage mood swings seemed intensified. Confusion, fear and anger were expressed in words and actions which only aggravated the upheaval in our lives. Stress in our home seemed at a crisis level and we knew that we needed an objective approach with some indepth perceptions to help us cope.

Some people feel that obtaining professionai guidance displays a weakened character, a recognition that someone failed. Quite the opposite, it takes great strength and courage to come face to face with one's limitations, so we sought counseling to help handle the many changes and problems we encountered.

I, personally, had so much to work through after my diagnosis. I expressed difficulty in understanding why some people I cared about, and in whom I thought the feeling was mutual, drifted away after hearing the news. Perhaps they were afraid to say or do anything that might upset me. If people could only know that no matter what the struggle, silence is more piercing, more destructive than a misspoken word or awkward gesture.

I now know that these people are the ones to lose something valuable... my friendship, as I'm still the same person inside, with or without MS.

I've come to learn that there are many alternative ways to make a quality difference in people's lives even though MS has changed the game plan.

I can still be there for my family... with my husband, we have a strengthened bond in heart-to-heart talks and quiet, less hurried moments. With the girls, we learned to make the most of my rests at home with more time to hear all about happenings at school, town and worldwide current events.

Though I don't run the bases anymore, Tim and I enjoy playing cards, computer and board games, coloring and our favorite, armchair travels through lots of terrific books.

In the "get up and go" pace of my life before MS struck, these precious privileged times were honestly fewer and farther between. Now my mothering is different from before but surely packed with all the love of the more ablebodied.

It may sound very strange to say but despite the hardships, we've also been enlightened by the most amazing blessings I could ever imagine. I've come to know the truest personification of friendship from an incredible network of family and friends. These caring people were always there for us with constant support, compassion, understanding, much needed humor and kindness.

Our family was physically and emotionally "carried" through the early days and passing months with offers of child care, transportation to and from doctor's appointments and the Rehabilitation Hospital, and actions almost unheard of nowadays - a full year and a half of tri-weekIy meal deliveries, most made by the staff and parents of the child care center I work at! We are forever indebted to our special family and friends who impacted our lives in ways that words cannot adequately convey.

Our children had to grow up faster in many ways and accept more responsibility in helping to maintain our home. They also learned some valuable life lessons in the security of commitment, the immeasurable power of faith and love and the boundless goodness of human nature.

I firmly believe now that living with multiple sclerosis and its domino effects has moved our family into a "stronger more centered place," words written by a free-lance writer, Linda Weltner. Our family hung in there together, faced the ups and downs with trust and tears and reestablished what's really important.

My sincerest wish is that we are all better people for the experience.

Sentences that deserve some special thought (With a brief commentary)

1. A depression seemed to drag me down. I hated what had become of me.

This is an absolutely normal reaction not only for a person whose capacities are becoming more limited, but for a newly diagnosed person as well. Acknowledge this feeling with the understanding that most people can and usually do work through to the next stage -which is acceptance and rebuilding from an alternative base.

2. At first my pride interfered with my decision to accept these devices, but I now see these aids as my renewed freedom.

You may never need an aid, but store these sound words of advice in your memory box- they can help you- or perhaps help you to help someone else.

3. Some people feel that obtaining professional guidance displays a weakened character. Quite the opposite.

Jan's words say it all. There is nothing wrong- and everything right- with seeking support whether it be from a professional counselor or therapist, an MS support group, or a clergyman, rabbi or priest. Never feel you need to solve a problem alone.

4. If people could only know that no matter what the struggle, silence is more piercing... than a misspoken word.

These words are for friends of a family in which MS has struck. Don't let embarrassment or awkwardness keep you away. No matter how small your signal of support, it will make a positive difference.

5. I can still be there for my family. Jan's ability to be flexible, to take alternative routes to achieve desired goals is worth noting.

6. Our family hung in there together, faced the ups and downs with trust and tears and reestablished what's really important.

Every family has strains placed on its relationship. Jan's closing words could become a prototype "sampler" to hang on all our families' walls.

-Dr. Nancy Holland, KP., NMSS 

Jan Haroutunian is 39 years old and live with her family in Arlington, Massachusetts.