It all started when Maria Caruana de Brincat was still at university. She felt several different symptoms, variously diagnosed as colds, vertigo, tinnitus (a constant ringing in the ears), and Otosclerosis a condition of the middle ear which mainly affects the tiny stirrup (stapes) bone. At the time, it was all put down to stress caused by the pressures of university study.

However, soon after she graduated in nursing she started to lose feeling in her feet. The numbness then spread throughout her body. "I have swayed like a drunken sailor, and have had slurred speech, mind fog, lack of concentration, and changed sensations such as feeling cold water scalding hot. Lately, I feel as if ants crawling on my body when in fact there are none," Maria says.

Eventually diagnosed with multiple sclerosis at 23, Maria is now 34. She is a dedicated wife and mother, and campaigns to create awareness about a disease which interferes with the central nervous system, disrupting the transmission between the brain and spinal cord and the rest of the body.

Maria says she feels numbness and, among other things, pins and needles in her lower limbs, a burning sensation in her bones, a feeling of tight bands around her thighs, and general fatigue. She rarely mentions these ailments to others and, because she often looks well, people are insensitive to what and how she feels.

When she was first diagnosed, Maria had been in a relationship for more than four years. However, that soon ended as her fiancé realised he could not cope with seeing her regress. "I remember being very angry, sad and frustrated," Maria says.

"How could a healthy young woman get sick? I did not drink alcohol. I never smoked. I had a healthy diet and lifestyle. We were planning our future, house hunting, doing all the things engaged people do. We were looking forward to life together but that wasn't to be."

Although angry and hurt, the experience gave Maria strength. She recalls how her colleague Tessie Apap lifted her spirits every time she felt she had hit rock bottom. Today she lives in acceptance of her situation and is confident that she can face whatever comes her way.

"I may not have the strength to do the things I used to do," she says. "I get tired and feel burnt out quickly, but I knew then that my life was not over. Eventually a new chapter began and it was my up to me to make the best of it, not just for my family but for others in the same situation."

Maria never thought in a "million years" that she would meet and marry her husband. He is extremely supportive and they have two wonderful children. Maria says she was advised that pregnancy and multiple sclerosis don't always go well together, especially if a mother is undergoing treatment.

The couple worked things out and Maria used to manage her symptoms by crisis, taking treatment only when absolutely necessary. Both pregnancies were successful and healthy and, despite the usual morning sickness and fatigue which most other mothers feel, Maria says it was a time in her life when she felt most alive.

"The pregnancy hormones gave me a boost," she says. "I still had my usual fatigue, and all the aches and pains related to MS but I was on a mission. It wasn't until the seventh month of the second pregnancy that I felt constantly tired. I felt drained even after a good night's sleep."

Maria does not take any medication specifically for MS. She is on a gluten- and dairy-free diet which she says has helped her, and takes supplements to substitute what she lacks in her diet. "I still do the things that mothers do," she says. "I cook, clean, and fret over the children's studies and their upbringing except that, in my case, things are done at a snail's pace. A task per day, and nothing too strenuous, because I know that I will be using energy I need for the next day."

She believes she panics more than other mothers do, not knowing what tomorrow will bring, but that hasn't stopped her putting herself out for others. Last winter, my daughter was rushed to hospital by ambulance. After all the necessary treatment we were told it was safe to go home, but there was no one to take us back. By then it was night time and because my family was away, I was about to call a taxi.

Meanwhile, a colleague who had seen me rush off earlier sent me a text message to see if there was anything his family could do to help. When he heard that I was going home by taxi he put the phone down and called back within seconds informing me that his wife (whom I had never personally met) was on her way to hospital to take us home.

That was how I met Maria and found out how selfless she is. She wrapped my daughter up in a warm blanket, saw us to her car and took us home. I could not thank her enough. She still came to my rescue at the time of day when she most needed rest. It's the same selflessness that drives her effort to create awareness.

Her message to those with multiple sclerosis is: "Every day is a battle that all people, sick or well, have to face. Do not feel weighed down because you have a diagnosis. Feel relief that you know why you feel the way you do. There are others who are still in a dark place not knowing what is going on. Every day is a gift. Spend your time wisely. Never have regrets. Live life positively. There are so many things that could make you have a bad day. Living well is all about perspective."

 

A 'silent' condition

Multiple Sclerosis is a 'silent' condition, one that many people do not know much about. Maria says ignorance of the disease and what it feels like creates misunderstanding and a lack of empathy.

"If you see a 'normal person' park in a blue parking bay, with a valid blue badge on the dashboard, do you expect to hear sly comments asking who you bribed to get a badge, or to be waved on as if you had taken the space of a disabled person? Not all disabilities are visible."

Maria once overheard a woman across the road pass critical comments about her for being drunk and in the company of a young child. Maria's son was then just two, and she was completely sober. She swayed when she walked because her leg muscles were weakened by her condition.

"I was too shocked to say anything right then," she says. "People are ready to judge and pass critical comments that can crush you. I didn't need that at the time, but it helped me become determined to create more awareness."

 

MS Awareness

"We all have baggage, it is a matter of how you manage to carry yourself. Someone with a pretty face, or a well dressed person, may still be screaming on the inside. We all wear masks," Maria says.

The Facebook page she set up, Multiple Sclerosis Malta, is an open platform where others can post and share experiences. "Sharing experience helps you realise that you are not alone and that there are others going through a lot more than you are," she says. "It is good to be able to help and offer a virtual hug. Some people, including me, go through phases when you would not want to see others worse off than yourself."

Maria says there is not enough information available when you are first diagnosed and the information found online is very disheartening. "Every case is unique. We all have similar symptoms, but I may have a higher pain threshold so it doesn't affect me as much," she says.

"I have brothers and sisters of my new family all over the world. I really look forward to seeing them online after a long absence. I know that it would have been a necessary silence due to the symptoms. It is always good to know that there are people who look out for you, even if you have never actually met them in person."

 

Multiple Sclerosis Malta (set up by Maria Caruana de Brincat)

www.facebook.com/pages/Multiple-Sclerosis-MALTA/363213778849?fref=nf

MS Society, Malta

www. msmalta.org.mt   T 2141 6206

 

Multiple sclerosis - the facts

 

• MS affects the central nervous system by impairing the function of the brain and spinal cord to send messages to the rest of the body.
• About 257 people in Malta are believed to be suffering from multiple sclerosis, according to the MS Society of Malta.
• MS generally attacks young adults and affects women more than men by a ratio of three to two.
• MS is not infectious or contagious and there is no known cure.
• U2's hit song Beautiful Day is dedicated to MS sufferers.

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