I have been living with the effects of Multiple Sclerosis for past last 38 years.Thankfully, I have remained active in my family's life and in church. Also, I worked as a Registered Nurse in a Psychiatric Hospital for 16 of those 38 years, during which time, some of my harshest symptoms haunted me. Every person with multiple sclerosis should keep in mind that "active" does not necessarily mean physically up and running, or doing handstands, but in my case, being active means that I am still listening, talking, walking with an unbalanced gait, and being a contributing person to society, especially to our family.
I knew I had MS before the neurologist diagnosed it. As an RN, I knew the symptoms, the tale-tell symptoms, as well as having a childhood, high school friend who was diagnosed with MS. Donna was not as lucky as I was. She suffered severe pain, was confined to a bed, only able to be placed in a wheelchair by staff and family members when she rarely wanted to get out of bed. You see, Donna was pregnant after years of trying. She had a very strong marriage. Her husband and her family supported her in all of her decisions, except one.
Stepping backwards for a few minutes, during Donna's first trimester, she got up out of bed to go to work as a Circulating Nurse in Surgery at a local hospital. When she started to walk across the floor to the restroom that morning, she collapsed to the floor. Her legs were totally numb and unable to support her.
After being admitted to the hospital for testing, reality raised its ugly head. Donna had Multiple Sclerosis. Just the day before, Donna's world was bright with anticipation at being 3 months pregnant. Now, the pain she had was excruciating. The doctor had to place her on a strong narcotic pain medicine, which concerned Donna & her husband, as well as her parents and physicians. Days turned into weeks and Donna remained in the hospital. Nursing staff had to give Donna total care, turning her every 2 hours to prevent decubiti from forming. Back in the early 1970's, hospital stays like Donna's could go on for weeks, even months.
As expected, Donna experienced depression. She and her husband were looking forward to the new addition to their family, They had been trying for several years to start a family. Donna's dreams and excitement of carrying a baby had been foremost in her thoughts. Now, she knew that after the baby's birth, someone else would be caring for her baby, giving her baby a bubble bath, taking her little one for her immunizations, and eventually, taking her daughter to kindergarten and picking her up, whenever she fell down, and all of the other multitude of things that mothers do for their children.
Donna had suddenly gone from a fully functioning Registered Nurse who worked in the Surgery Unit, to a total care patient who was 3 months pregnant. Yes, it is so important to "feel" what Donna was going through. The dreams of a new mother of having a healthy child, one who would grow up to be active bundle of joy, who Donna should have been able to care for, take on walks, play on the floor with her, and eventually teach cooking and sewing, go shopping with, do all of the activities of a mother-daughter twosome... well, dreams collapsed.
As expected, antidepressant medication was added to the already growing list of medications that Donna obediently complied with... The pain now controlled her body. The future was uncertain. Life, as Donna and her husband knew it, had suddenly turned upside down. They worried about the effects of the medications upon their baby, but Donna was in too much pain to be able to live without the medication.
The due date came and went. A few days passed and Donna's baby delivered naturally. The baby was addicted to the strong pain medicine that had passed to the placenta, which nourished the baby while Donna lie in her bed, unable to walk or sit, only able to use her upper body as long as the pain stayed at bay. A shrill screaming cry pierced the nursery as Donna's little daughter was carefully monitored and weaned very slowly from the narcotic.
With Donna no longer employed, the couple's income could no longer handle the house payments, medical bills, and the added expense of baby's needs. So, Donna and her husband and baby moved in with Donna's parents. Donna's total care, as well as her new born baby's needs, fell directly on Donna's mother, who never complained, only thankful to still have Donna and her granddaughter in her life.
Two years passed. The baby was now a beautiful toddler, getting into everything. Donna lie in bed, with the continuing thought of how she was a burden to all that she loved. She had wanted her daughter to have a mother who could do things with her, teach her, play with her, and get her dressed, comb her hair. Life had squashed that dream and Donna chose to not allow her family to suffer any longer at her expense.
With determination that her plan would work, Donna hid a table knife she had taken from her noon meal tray. Five pm came and Donna was found in a pool of blood, with her ankles slashed, the place that Donna could reach and where she had lost all feeling.
The ambulance was called. Donna fought the paramedics and continued to push the nursing staff in the ER away, saying "let me die", "let me die". Donna's wish came true right there in that emergency room, a place where Donna has once felt at home as she had worked to save others during her active years of professional nursing. Yes, Donna had become an invalid due to Multiple Sclerosis and cases like her's are the ones that come to mind when a person is first diagnosed with having Multiple Sclerosis. However, these cases are not true for the majority of MS sufferers.
Now, for my part of this story.
Diagnosed at age 30, while pregnant with my second baby, I had not experienced pain as Donna had. I had not become an invalid, needing total care from hospital care givers or my family. Remember, I know that I have not experienced the severe and crushing effects that a person experiences who has paralysis of several limbs.
Instead, I had extreme BPV - benign paroxysmal vertigo. My head was spinning and I felt like it was going to spin so fast that my head would fly off of my neck. The terrible dizzy effects continued night and day. When attempting to lie down in bed, the position change of going from standing to lying, sent stronger waves of dizziness to my head and the natural thing to do was to hold onto my head with both hands, seeking any possible way to stabilize the whirling effect. Of course, nothing helped. Three years passed and I learned how to drive with only going to red lights, for at stop signs, I had to turn my head to see if any cars were coming and the vertigo just did not allow me to keep myself and others on the road safe from my condition.
Tests were run. Yes, the vertigo sent the waves off the charts. When walking, I had to hold onto the walls, making sure to not cross a floor without having a death grip on a solid structure. What appeared to others as merely a couple of feet, was not navigational for me in my condition. I started using a cane to help balance. I did not raise my head to look up at a clock or see a movement above me. I could not risk falling over in the direction that my head took me.
The spinal tap was finally done. Waiting for the results was nerve wracking. For it was my friend, Donna, who had ended her life, and my thoughts and prayers went up for my parents. Donna and I were both from the same small town. People knew each other, and my parents compared me to Donna. Questions stayed on their minds. Would I, too, seek total peace, by committing suicide so as not to be a burden on my family? My family knew I was a very independent person and that I would not wish anyone to have to give me total care. I was a nurse, the one person who is supposed to provide care for others in their times of need. I was not supposed to be the one in need.
Three years passed. The extreme 24 hours per day, 7 days a week, finally went slowly away. Lack of balance continued. Numbness in my hands and face stayed, as well as other smaller scale symptoms and inconveniences. I had remained active, since my legs had continued to hold me up. I had never become an invalid as Donna had. I kept myself busy, working full time at a local medical facility, taking my older daughter and her classmates on field trips, while bringing my younger daughter along to enjoy the day. I fought against the demons that threatened to destroy who I was - the God fearing, spirited individual who loved life.
I returned to college, taking evening and weekend classes, to further my nursing degree while I continued to work full time at the Medical Center. I got very little sleep. When seeing the neurologist one day, he told me to "keep doing what you are doing". This doctor turned out to be like so many others - not really listening to their patients, not caring out their patient felt, only fulfilling the all too common routine by telling the patient to come back in 2 weeks, or a month, just so long as the physician did not discharge the patient from his/her service since the patient had not reached optimum health, considering the circumstances.
Yes, Multiple Sclerosis remained in my life, with my family fully aware of its impact. This was a part of MS that we had to deal with, each on a personal basis, yet sharing our feelings with each other when the need arose. We talked. We listened. We supported each other as all of my family members had become victims of Multiple Sclerosis, each in their own way.
The years have passed. I was able to be there for my two daughters as they experienced school with all of its trials, as they dated, and shared with me what they chose to share with me, and also, marriage, and children of their own. I am an active wife, mother, and grandmother. There are many things I cannot do due to Multiple Sclerosis. Yet, I count my blessings for what God has allowed me to continue to be a part of.
My nursing skills are still utilized as family and friends seek me out for information, for support, and for a listening ear. Yes, there are thousands of MS sufferers in the United States, as well as in other countries. Each has their own story to tell. Some are more tragic than others. Disease plays no favorites. Anyone can be the next victim.
Life does not always turn out as lovely as our dreams hoped it would be. However, living with Multiple Sclerosis has blessed me and my family in its own ways. We are closer. We help each other, support each other, and listen to each other. We put others feelings first; for we know we cannot be selfish. We are a family, one special family that has blessed in so many, many ways, while living with Multiple Sclerosis. Whatever trials we may have in this life, we can survive with a positive attitude. The sun shines on the just and the unjust. The rain falls on the desert and in the mountains. Each of us must make a choice when facing life's obstacles.
I choose to look at the glass as half full, that situations could always be worse, that by keeping a positive attitude, I can and will life a happier life, no matter if Multiple Sclerosis has changed the way I am able to do even the simplest tasks. The choice is up to the individual. You have the right to make your own choice. The Individual's Attitude Makes the Difference.
