A favorite family story revolved around how accepting I am. I was about three years old and waiting to cross the street with my mother and her best friend. A midget came and stood by us. My mother and friend waited with baited breath for me to say something. Instead, I am told I looked the woman up and down, gripped my mother’s hand and crossed the street.
Another favorite family story concerns my mother’s pregnancy with my brother. He is two years, nine months younger than me. Almost flippantly and buying for time, they announced there was going to be a new baby and it had been ordered from Macys. My mother ordered from Macys all the time so, of course, this made perfect sense to a two year old. I never said a word about her getting fat.
One more favorite and this one speaks deeply to who I am. When I was about one, my mother inadvertently bent down and was hidden from view. I am told I looked around, didn’t see her and proceeded to practice walking. When my father came home from work, they both hid. Again, I looked around and proceeded to practice. I actually walked in public for the first time at my one year celebration at my grandfather’s. Another baby tried to play with one of my new presents. I stood up in front of all and calmly walked across the room and took it back.
So, what does this say about me? Well, we can’t tell about what I was thinking back then. What I do know about me now is that when I was working, I tried to make everything look easy. I had to figure it out myself before I would do it in front of others. See learning to walk anecdote above. I also worked with a myriad of proprietary software applications. Almost always, I worked around things unless they were totally broken. See above baby stories. I also have a wide and diverse circle because of my accepting nature. I take people as they are, for the most part.
Now onto my disease, condition, whatever you want to call it. When my body started acting differently, I ignored it. I broke down and visited my husband’s PA because I thought I knew what it was. It wasn’t. I then embarked on a doctor journey – neurologist, rheumatologist, endocrinologist. An indecisive spinal tap. Whilst all this was going on, I did not look up anything on MS. This was partially due to my not wanting to influence my perception of symptoms as well as flat out denial.
A word about doctors and the medical profession – I was brought up with a healthy disregard for them. My parents didn’t readily believe everything a doctor told them. Another story. My mother’s ob-gyn accused her of eating improperly during her pregnancy with me, particularly salami which she abhorred. She came out of the hospital after having me, weighing less than before she was pregnant with me. She went to her postpartum visit, told him off and never returned. As they aged and became more experienced, they trusted even less. The second part to my disregard of doctors is having been exposed to pre-meds at Johns Hopkins. At 18, I prayed to never get ill. So, I take most things doctors say with a huge grain or grains of salt. I have never truly embraced my diagnosis. I refuse to believe there is no hope. I have tried and continue to work with alternate therapies. However, this year I came to a realization or several. I advocated to get a spectral leg and then an improved one. For the second one, I looked on line for something that would be less obtrusive and allow me to wear better (prettier) shoes. I did not research what people said. I did realize after awhile that I was throwing my right leg to the side. Back to the doctor and for the first time, I was referred to a physical rehab doctor. I had never known. This doctor was the first one who actually evaluated my walking and what I really needed. Result? Frankenstein! I went on line and discovered that other people felt like me about these braces. So I could discount his statements about wider shoes. I, also saw, that feeling ugly is valid. It can and does impact my health. Several years ago, when I was employed and making rather decent money, we found out about the Bioness. It was around $7000, not covered by insurance. I asked my neurologist about it. She told me I probably would have the same result with the spectral leg. I accepted that. Now, I have seen research and reports from people on the Bioness and the Walkaide. Wrong! It may truly have helped.
When I was first diagnosed, I immediately thought about food. I consulted a nutritionist who made all kinds of claims about a diet that made no sense to me. I asked my neurologist, who concurred. I accepted. It was the Swank diet. If the nutritionist or the doctor had said so, I would have researched and gone for it big time.
The same thing happened with exercise. I had started Zumba, which I love. My doctor approved. I did water aerobics for awhile. ( I couldn’t get out of my suit and canes and water are slippery!) I did get the occasional prescription for physical therapy. I did have an MS Yoga video. I have just discovered MSWorkout and the MS Gym online along with a myriad of other exercises on Youtube. Movements I can do that help me.
So, I am fighting my way back on three fronts: food, exercise and walking assistance. My nature took to the fore over my upbringing. I have learned a very hard lesson. And yes, I guess it can be said that these insights into my character is an upside. I would have preferred not to have had a reason for these. All I can do is move forward with a new understanding of the effects of my nature – positive and negative.