Opening Up with the Extraordinary Eight
My mother and father parented five daughters and three of the five blessed them with 8 beautiful, intelligent, gifted unique grandchildren. We consider and have coined them our extraordinary eight. When I was diagnosed with Multiple Sclerosis, their ages spanned from 14 to 3. The older ones remember Aunt Dianne before the challenges, assistive mobility devices, falls, exacerbations and such. The younger, not so much or at all. They all accept my life as the norm with little commentary about it, so I thought it'd be interesting to hear what they may think or wonder. Hence, I opened the floor to a Q&A and had a little interview session with our extraordinary eight..
Is it fatal?
My son, Justin, is the first of the extraordinary eight. He sees my daily challenges and remembers best when I lived without MS as he was 14 years old when I was diagnosed. I remember at that time he simply asked “Is it fatal?” and upon finding out that it isn't, he replied “Then we can deal with it”. Now, he’s 25 years old and he wonders how MS has most affected my life.
MS has primarily caused me to have a life of dependency. But, it has also taught me to live without taking anything for granted and appreciating life.
My first nephew
I was introduced into the wonderful world of ‘Auntie-dom’ with my Nephew Wilson, who just turned 21 this year, but was 11 when I was diagnosed.
Wilson was born with Down Syndrome and his primary question to me is “Ap-bul?” He wants to know if I have my seemingly endless supply of apple sauce in my refrigerator for him to partake - and I do! Just for him, my Wookie!
What mental and emotional problems do I face?
My very first niece Paige, age 8 then and now a 20 year college student majoring in Early Education wants to know what are some problems I face, not just physically and emotionally, but mentally as well. She also asks if I ever wish I didn't have MS.
I know that physically, many of my struggles are apparent - walking, getting up, getting in and out of the car, etc. Emotionally, I deal with feelings of frustration and even sadness sometimes when I'm unable to do the things that I want to do, go to the places I wish to go and the unpredictability of MS. Mentally, I try to avoid the negativity MS causes and stay focused on the positives in my life. It truly makes a difference. And although I try to make the best of my situation, I would MUCH rather live a life without MS.
How have I remained positive?
My nephew Dorian, who also happens to be my God-son, was 8 when I was diagnosed and is now 19 years old and about to enter his second year as a Marine and Environmental Sciences major. He wants to know how I’ve remained so upbeat and uptempo after I was diagnosed? He inquired what is my secret?
I had/have so much to live for... my children and family, friends, things I love - new and old - to do. I focus on every positive thing and it makes it so much easier to maintain my exuberance. My secret? Adhering to the Serenity Prayer... Specifically, praying to ‘accept the things I cannot change, having the courage to change the things I can, and the wisdom to know the difference. I live one day at a time, enjoying one moment at a time, accepting hardships as the pathway to peace’. And “...Taking, as He did, this sinful world as it is, not as I would have it; Trusting that He will make all things right if I surrender to His Will; So that I may be reasonably happy in this life and supremely happy with Him forever and ever in the next."
Is MS genetic?
At 9 years old at the time of my diagnosis, my now newly graduated, college bound 18 year old nephew Dion is interested in knowing if MS is genetic.
As far as I know, I am the only one in the family - paternal and maternal - who has MS though there have been other autoimmune diseases diagnosed within our family. I wonder sometimes if there is a relation in any way. The National MS Society says that though MS is not an inherited disease, there is a genetic risk that may be inherited. In the general population, the risk of developing MS is about 1 in 750 - 1000. The risk of developing MS is increased when a first degree relative (parents, siblings and children) have MS.
How did I feel when diagnosed?
My second niece who is also my God-daughter is 16 now, but was 5 when I was diagnosed. Her name is Rachel and she asked how I felt when I first found out I was diagnosed with MS?
Surprisingly, I initially felt relief. I knew things weren't ‘right’, but worried I'd have to undergo a barrage of tests and doctor visits to no avail. This had been my experience 6 years prior when I'd fallen ill and though I learned years later that it was the onset of the MS, I was erroneously diagnosed back then with Benign Positional Vertigo, but I never believed it. To finally have a medical professional ‘get it’ and accurately diagnose was enlightening and, again, a relief.
How old was I at diagnosis?
My youngest nephew, Wesley, was about to turn four when I was diagnosed and he’s 14 now. He wanted to know how old I was I when I was diagnosed.
I received my diagnosis on July 13, 2007 and I was 37 years old.
Advice for the newly diagnosed
The baby of the eight is my daughter, Jessica. Like her cousin Wesley, she was only about to turn 4 upon my diagnosis and she, too, is now 14. Jessica witnesses my daily struggle first hand, asks what advice I'd give to someone who was just diagnosed with MS.
I’d tell the newly diagnosed that the road they're going to trod will undoubtedly be difficult, but it helps mentally to be prayerful, optimistic and positive. Finding ‘tools’ to help avoid feelings of depression, hopelessness, and despair is important. Additionally, identify and utilize available resources and support systems such as your family and friends, your local MS Society, or the MS Foundation. Listen and comply to and with your MS specialist(s)’s orders and advice. Don’t succumb to the challenges you’ll likely face, but rather keep going until you just can't anymore. However, listen to your body so you're careful not to put more on it than it can bear... And lastly, you are not alone.
How many specialists did you see before finding "The One"?