The profile of the month is chosen by the MSIF editor from those submitted.

Sue Lawrence-Reeder

Email:Contact Sue
Country of Residence: USA
Year of Diagnosis: 1980
Occupation: Owner/Producer/Director of a digital media company
Type of MS: Relapsing Remitting

Sue Lawrence-Reeder has received three very prestigious awards this year for her work in the video and film industry, which is quite an accomplishment as she set up her own company only two years ago. Sue refuses to let her MS stand in the way of life and work.

Sue’s story
I worked for a large corporation, DuPont, for 27 years. However, 2 years ago, the company decided to close their in-house production studio in a cost-cutting effort, meaning the loss of my job and those of 13 of my colleagues. It was frightening at first. I was 50, a parent with a young child in school, had a house which wasn’t paid for and I had a disability. I figured my chances of being hired anywhere were between slim and none. So I decided to start my own company.

It really was my best option. That way I could set my own schedule and run a business the way I thought it should be managed. I always believed I could do what I did for a living without being part of a large company like DuPont, as long as I could stay healthy. That was the challenge. So this has really been an opportunity for me to prove I could make it alone.

For the most part it has been very successful. Starting up a business is stressful and there are many long hours required just to get off the ground. But, overall, I think I’ve managed pretty well physically, and the awards speak for the professional part, I guess.

Some people ask how I do it. My schedule is pretty hectic. I recently spent a month in Europe, I have numerous business association activities and non-profit responsibilities, a child to care for, major health considerations, and naturally a demanding client base. But there’s no simple secret that I can summarize. I guess I would say very careful planning and setting priorities are important. I try not to book my schedule so tightly that I don’t allow for recuperation time following a busy shooting schedule or long days of editing. I try to allow for a rest period every afternoon if possible, even if it is just for a few minutes. There are some days that a few minutes are all I need to keep going. But, of course with MS, there are other days when an entire day of rest does no good at all. You simply don’t have the strength. And I choose my tasks wisely. After many lessons learned the hard way, now I ask myself “is this something that I really need to do now?… is there are easier way to do this?...should I ask someone to help me?” Questions I would never have considered before.

Fatigue is probably my biggest problem with MS. And the heat. Definitely the heat is a major factor in how well I feel. But it’s the fatigue that brings on the other symptoms. I have the form relapsing/remitting MS. My symptoms come and go. Sometimes they are profoundly obvious, sometimes they’re not. That’s the nature of the disease. I have a variety of symptoms, but mainly I start to feel muscle weakness in my arms and legs, my vision becomes cloudy and I start to get muscle spasms which can really tie me up in a knot. It’s not fun I can assure you!

It can be very frightening and very frustrating to live with, but after having the disease for over 20 some years, you do come to expect it and even though it’s scary, you know you can usually avoid the symptoms if you are careful about your environment and pay attention to your body and the warning signs. This is really minor compared to what life was like before the use of the medications now available.

When I was diagnosed back around 1980, there was no treatment for MS except for large doses of steroids when attacks occurred. For me, the drugs were almost as bad as the disease they were meant to treat. The side effects were just dreadful. I was hospitalized numerous times during the first four years after my diagnosis. In fact, my health deteriorated rapidly with a new attack occurring about every four months. I had severe balance problems leaving me constantly nauseous and unable to work or walk unaided for months at a time. At times my eyesight was so limited, I could no longer draw, read or even watch TV. I was in almost constant pain from back and neck spasms. It was one of the worst times of my life but my faith in God and my determination not to be a victim drove me forward. I worked constantly trying to act like a well person. I must admit, I think vanity played a big part in that. I desperately wanted to get back on my feet and be able to walk normally, even if balance was still a problem.

People often say that they wouldn’t know to look at me that I have MS. I hide it very well. I guess that’s the professional director in me. It’s all an act! Since I don’t have much natural balance anymore, I use my eyes to scan the walls and floor to help me stay upright. I do real well until I get into a dark room! That’s why my house is full of nightlights.

I have made adjustments in my job to be able to accommodate my MS. Besides being able to set my own schedule, I’m fortunate to work with a very compassionate crew on the set who understand the issues I have to deal with. They’re very good at making sure I have a place to sit down to rest and a clear path to walk through behind the scenes where it’s frequently dimly lit. Actually, they’re just worried I’m going to knock over their expensive cameras! Shooting outdoors presents its own set of problems with the extremes of temperatures, though, so that is probably more difficult.

I’ve tried a variety of things to help me get through very hot days. If possible, I try to stay in an air conditioned truck or building close by until I’m needed on set. I also have cool packs handy in a cooler to place inside my waistband, under my hat and an iced bandanna around my neck. My worst experience was one extremely hot three day outdoor shoot we had out in the middle of some farm fields. We had a large shade canopy constructed for the equipment crew and me to work under but it was little relief from the midday heat which was near 100 degrees with equally high humidity. I spent the three days with my bare feet in a cooler filled with ice water trying not to lose my strength! That was the most difficult shoot. I felt myself getting more debilitated each day. By the end of the third day, I could no longer read the script pages and had to be lifted back into the truck by two crewmen when we were packed to leave. I didn’t even have enough strength in my legs to safely drive home. I lost a little dignity that day but worse than that, I couldn’t get out of bed for the next week and it triggered an attack that left me barely able to get around with a cane for the next several months.

That was about eight years ago. I’d say rest, time and the new medications that are now available eventually did the trick in helping me to recover. I now take daily injections of one of the new drugs used to lessen the severity of MS. It’s made a great deal of difference in my quality of life.

I have far fewer symptoms now and when they do occur, I seem to recuperate more quickly without the progressive disability I experienced in the earlier years before the drugs were available. I feel a bit more confident now that I won’t be exchanging my director’s chair for a wheelchair anytime soon. That’s a prayer, by the way. The truth is without a cure, no one with MS really knows for sure one day to the next. You just have to have faith.

I think it’s quite possible that there may be a cure for MS in my lifetime. There are many dedicated scientists and researchers around the world zeroing in on the causes of this disease. They have already provided us with drugs for treatment, thank God, which do a pretty amazing job of keeping the disability more controllable. I just have to believe that a cure is just a matter of time. In the meantime, we have the support of MS organizations and thousands of volunteers who help us keep our chins up and our eyes to the future.

Someone asked me what advice I would give to those just diagnosed with MS. Well, first I would say allow yourself some time to grieve. It’s OK to feel sad and scared. Allow your family to grieve with you. It is a diagnosis which will affect all of those who love you so it is important to let them in on the process of accepting what has happened. MS is a serious disease, but it is not the end of the world, so grieve and then move on. Don’t dwell on your “disability”. Instead, concentrate on your abilities. Stay busy helping others who are in greater need than you are, and never think of yourself as a “sick” person. Ultimately I believe we are who we think we are. If we believe we are disabled, that’s what we will become. Much of our healing comes from within and we can either learn to foster that ability or sabotage it with negative thoughts. Above all, I’d say to remember that there is an opportunity in every challenge in life. Make the most of every healthy day you are given.