I am not sure when my Multiple Sclerosis (MS) story began.Maybe it began when I was a little girl and was called clumsy, because I’d trip over my feet when overheated.
It could have been with my legs giving way as I tried getting out of bed one morning in 1976.
Or maybe my MS story began on that Sunday of 1986, the day of my daughter’s confirmation ceremony, when an excruciating pain jabbed through my head into the back of my right eyeball.
At a tender age, Mary was diagnosed with Epilepsy and later, with Multiple Sclerosis. Unlike most of us, she did not buy the negative picture facts painted around her condition. She stepped back to study her body and approach her condition with love instead of fear.
Let’s continue with her story and see how a different approach can transform your life even in cases of stigmatized illnesses.
I remember being rushed to The Bowman Gray hospital in Winston Salem, North Carolina in 1976. My CAT scan (the MRI had not been invented yet) results came up and I was diagnosed with Guillain–Barré syndrome (kind of paralysis) which the doctors believed had stemmed from a flu shot that I had been given. With that I was barred from being given any kind of vaccination ever again and was told that my legs might get better. Or they might not.
Little by little, one day at a time, my legs regained functioning until one day I just hopped out of bed and walked again!
During the 1986 incident, where I felt an excruciating pain in the back of my eye, I was lucky to be with my girlfriend who took me to an eye doctor. The doctor did not tell what he suspected was wrong, but prescribed me prednisone on one condition – that I would visit my internist the next day. I agreed and left with my prescription.
Prednisone comforted my eye and I did think about not going to my internist. However, a promise is a promise. So I took my daughter, Stephanie along and visited my internist the following morning.
As I sat with my internist, who thought it’s best not to tell me what was wrong, he took one look at me and began shaking his head. All he asked of me was to go over and meet my neurologist – Dr. Patricia Walicke.
Dr. Walicke had been my neurologist since 1958, when at a tender age of 6, I was diagnosed with Petit mal temporal lobe Epilepsy. It is a kind of absence seizure where for a small time period the person loses his or her consciousness.
By the time I left internist’s office, I got suspicious that something was definitely wrong. My fears confirmed too, because no one was assuring me that all was well.
Finding out the truth
When I visited Dr. Walicke, she immediately ran an MRI test on me. Later when we returned to her office, she told that the results confirmed presence of a demyelinating disease.
All I remember doing then was asking her to spell it so that I could go home and look it up. Demyelinating disease
Dr. Walicke knew that I was a speaker for the National Epilepsy foundation and taught people about epilepsy. So, she just blurted out, “Okay you have MS – Multiple Sclerosis.”
My daughter and I gave each other a couple of blank stares. We had heard about MS, but never paid any heed since it was not happening to us. Dr. Walicke gave me the phone number for the National MS Society and Stephanie and I left for home.
Next day I called the MS society and requested to mail me all the literature they had on Multiple Sclerosis. Only later did I realize what a mistake that was!
Taming the monster
With every page I turned in the material sent by the National MS society, I grew angrier and angrier. The literature was all negative!
Partly because it was 1986 and partly due to the ignorance of the MS society at that time.
I became so mad reading all that that I called them and questioned, “How dare you send me all this negative literature? What do you intend to achieve with this?”
They responded, “Well we hate to tell you….”
Before they could finish, I slammed down the phone as I shouted out, “I hate to tell you…..”
I picked up all of the literature and tore it apart.
I did not realize it at that time (and what I have come to learn with time), is the fact that I was making a conscious choice at that time to “buy out” of the negative picture of MS which that literature was painting.
I had a choice to make – either accept this fact, or deny it. Either forge a mighty spirit to be able to fight this MS monster or let it get the best of you.
And I…decided to fight!
I began my conquest by learning everything I could about MS. Getting my hands on all the possible ways to deal with the monster and confine it to its cave.
I knew I needed to approach the situation with love, which does not mean that one should love having MS in their life. I thought if I could leave out the fear for MS and approach it with “love,” possibly I could control it, instead of allowing it to control me!
I was already teaching these types of approaches. Now I had to use them on myself.
In my pursuit to heal myself of MS, one of the chapters in Dr. Swank’s book “The MS Diet”, the first book that I took up for assistance, opened my eyes. The chapter spoke to the MS personality. And boy! Was I reading about myself?
It said, “Type A personality has to have everything done right. And right NOW” Stubborn…WOW!
The quest for truth
At times I wondered: Why this disease? Was I not at ease in my life? What is MS trying to teach me?
One day, I was meditating at my desk analyzing on what I needed to learn from my diagnosis. Just then, Stephanie walked in. So I asked her, “I know I have something to learn from having MS in my life but I just can’t figure out what it is?”
She turned to me, “Well I know very well what it is!” She then exclaimed, “You take care of everybody, but yourself.”
Truth hit me like a lightning bolt.
She was so right!
I had just gone through a traumatic divorce. I was teaching middle school, running Stephanie to soccer games, still trying to speak to groups, and was working out hard at the same time. The MS was here to teach me to settle down and take care of MARY ELLEN!
Becoming my own doctor
Betaseron injections were launched in the year 1991 or 1992, which was about 5 to 6 years after I was diagnosed with MS. When the injections were out there was a national lottery for the first few injections. And guess, who one of those lucky winners was?
Yes, it was me! Mary Ellen!
The National MS society called me with the good news. I, however, did not readily accept the proposal and asked them to send information about the medication.
Upon receiving and going through the information, I researched as much was possible in my capacity. I then called them to inform that I am refusing their offer. The MS society obviously could not believe.
There were people waiting in line for this medication. But since I believed in my decision, I told them, “Thank you. Please call the next person.”
To this very day I have never taken any of the MS shots.
I do believe the shots are helpful in some cases of multiple sclerosis. I just do not feel it is the treatment meant for my particular case of MS. I use a few prescriptions and herbs (some Chinese herbal combinations) and they work for “my” MS.
Sharing the cave with monster
I always use the metaphor of a monster for MS because this is how I visualize myself while meditating – slaying the dragon.
When an MS attack hits, I sit down in a meditative spot. Then I visualize slaying the monster while settling myself down with breathing techniques. Twenty minutes later, no medicine, no doctors, and I am back to normal!
Sure, there were times when I had to add a medicine or two. But, not anymore.
People get surprised when I tell them that I used to play tournament racquetball and gave it up because of the way it heated me. That the heat would stagger me and I’d start seeing two balls instead of one, with no idea which one to hit.
The hot baths I longed to have after an exhausting day teaching at school are no more in my life now. Because they would make me lose my eyesight until I had cooled off.
Prior to being diagnosed with MS, both the occurrences were strange. It took effort, but I have fortunately learned how to live a full life without racquetball or bubble baths.
I have become strict on what I eat and drink. I no longer drink carbonated beverages and consume little alcohol. My meals include an apple for breakfast, a light meal at midday, and then an apple or something light later in the day.
With MS, some days are much harder than other days.
The hot days bring me crashing down. I can tell when my MS is active because the water in shower HURTS when it touches my skin. At times, the pain is so excruciating that I roll on the floor until my Neurontin kicks in or till the ice bags begin to work.
The fatigue is also not ordinary. It wipes you out.
Usually it hits in afternoon. But sometimes it is there even when I wake up in the morning. I am awake yet an attempt to open my eyelids feels like lifting 50 lbs. Sometimes I give in and rest.
Though with time I have realized that making myself get up and exercising feels better. I feel better because I choose not to bow in front of the monster.
Pain and fatigue have been the most difficult part of this deal. Yet I am determined to do the best I can, and for as long as I can.
I once visited an Ayurvedic healer in Chattanooga, TN for the pain. The healer put me on organic coconut oil for my pain and at present, I am pain free. Well, most of the time!
A couple of weeks ago, I woke up in the middle of the night feeling a knife piercing in through my eye socket again. My family was taken aback since this had not happened to me for a long time. My husband took me to the hospital where I was given a solu-medrol treatment.
I do not like having MS. It makes me angry – at times furious! I know that anger is fear and what you fear happens. In order to beat the anger I work out a lot and I advise anyone with MS to exercise.
Whatever you can move – MOVE!
Gradually you will notice that you can move more and more. In the very least, exercise will help you from staying depressed.
You have to make a conscious choice every day to do whatever you can to keep the MS monster in his cave. You must read, learn, and understand your particular case of Multiple Sclerosis. Doctors are good, but they are just people trying to help you. YOU must help yourself.
Eat correctly, exercise whatever part of your body that you can move, and think better of yourself.
I know how devastating MS can be because even for me the depression, the fatigue, the fight to stay healthy is an incredibly hard one. However, let us not give in – You can do this, I can do this and together we all can beat the monster.
Or learn to make peace with it, until it finally dies.
We were inspired. Did she inspire you to look at the brighter side of things too? Mention your thoughts in the comments below.
Another inspirational story is that of Lizzie Velasquez who was born without any adipose tissue on her body, meaning, she could never gain fat. To some it may sound like a blessing, but for her, the medical condition, Neonatal Progeroid Syndrome, is the reason behind her wrinkled skin, cardiovascular issues, lost eyesight, and premature ageing.