One of our readers recently emailed me her amazing story about living with MS and I wanted to share it with the entire EmpowHer community. Her name is Sarah, and her positive attitude and way of looking at life is so inspirational to me. I was really moved by what she wrote and I think she is definitely a role model for others:
Could a motorized scooter be the answer for me?
This question must sound ridiculous to most people. However, most people are not traveling the same road that I and thousands of others like me are traveling. At the age of 59 I was on an exciting path as a wife and mother, an active church and community volunteer, working in a career which defined who I was and looking forward to a retirement filled with traveling in Europe and the USA. However, my path took an unexpected detour which led to a dead end.
All of these changes in my life resulted in the loss of my stubborn independence and of the career that defined who I am. Fortunately I have not lost the most important parts of my life - my husband, my son and my sister. However, our relationships have been irreversibly altered.
My husband’s daily life has been affected the most but he has risen to the occasion by doing all the driving and shopping and most of the food prep and clean up. Intimacy is unfortunately an event in our past. MS decreases ones libido and makes what used to be enjoyable now painful. His role has unfairly changed from head of the household deserving of wifely support to that of caregiver. Because of his desire for me to be happy and fulfilled, my son has had a difficult time accepting the changes in my daily living habits. I don’t have a stronger supporter but unfortunately his role has changed from a son who needs his mother’s counsel to a parent as he has become the mentor and advisor. He is the joy of my life and I am in awe of his wisdom. My sister has been as always a source of wonderful support. She is older than I am, but I have always been the leader due to the differences in our styles and personalities and my obnoxious habit of wanting to control every situation. Now she is finally realizing her value and immense worth as the roles have changed.
Now that the background has been laid out, it’s on to the reason for my question about a scooter. The devastating disease known as multiple sclerosis has many different faces. For this reason and because there was very little published about MS until 15-20 years ago, few people know or understand how it affects one’s life. I know that people who say to me, “You don’t look disabled, you look great”, are well meaning. Such comments are well-intentioned; however, they do not make feel any better. I actually feel that they are questioning my right to disability and thinking that I could do more if I would only change my attitude and try harder.
Many of the effects of MS which cause my daily problems are known as “silent symptoms”. They are not visible and remain quiet to people who are uninformed about the ravages of this chronic illness. If someone sees me using a cane they do not realize that I can only walk a short distance with the cane before my right foot drops and I stumble and fall. I only use the cane when I go outside the house so I do often have falls at home. It is difficult to accomplish anything meaningful with a cane in your hand. My falls away from home have left me with staples in my head a number of times and torn ligaments in my knees. If I were on a motorized scooter these falls could have been avoided, but remember, “You don’t look disabled, you look great” leaves both me and others wondering if I really need such assistance. The Social Security Administration has determined that I am not disabled enough to receive benefits and that I could be working in some capacity. I have yet to discover what I can do since I do not drive more than a few miles from home only in daylight and certainly not in bad weather, that I am unable to function on my own two feet or to type other than by the hunt and peck mode. However; I am fortunate to be receiving long term disability which I am entitled to because both I and my employer for thirty years paid the premiums. Many of my fellow MS patients are not nearly so fortunate.
Other than my family members and doctors no one knows about my poor bathroom habits. Only my husband watches me struggle to type on the computer or write anything and sign my name due to my trembling hands. I was near to tears when we recently closed on our home because of the pain I felt from having to sign my name so many times. No one other than the two of us noticed the difficulty I was having.
In spite of all of this, there have been many blessings since I was diagnosed with MS. The power of love is something I now truly understand. Such as the love of a husband who is definitely living up to the vows he took standing by his bride to be there “in sickness and in health”; the love of a son who rode many miles on his bicycle in honor of his mom to raise thousands of dollars in “The Fight to End MS”; the unselfish love of a sibling who drove a couple of hours from her home on several occasions in support of her sister, helping her to unpack and get her home in order; and the deep and abiding love of my Lord who has a plan for my life and is with me on this journey.
My purpose in revealing these personal, embarrassing and painful facts is not to defend my right to be classified as disabled but to inform those who know little about MS and to create an understanding for all of us who have this life altering disease. But I haven’t answered my original question. The decision is in my hands to brave the uncertain world of accepting the reality of my disability and allowing all I come in contact with to see me as a disabled woman. I want everyone to know that I am a brave lady who accepts her fate and is making the best of her situation while learning and growing in the process. One of the truest lessons I have learned is from a dear friend - “when you stop growing you start dying”. This brave lady is not ready for that!
Who knows? Perhaps happiness is the freedom to be independent and to ride a motorized scooter to and from the store, around the block, to and from the scenic marsh or through the streets of London? I think I just might give it a try. My mantra could be “Motor Cycling Island Mama”!
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Add a Comment17 Comments
You might want to post to this link https://www.empowher.com/community/share/should-i-consider-motorized-scooter. That's where Sarah posted her story as well. Not sure if she's checking this thread as well.
I'll send her a link to this thread too.
Is there anything we can do to help you? I'm saddened to hear that you suspect you have MS.
Have you been to a good doctor who specializes in diagnosing MS?
Where do you live?
Best in health,
Michelle
December 28, 2008 - 10:54amThis Comment
If Sarah is reading this post, I have some questions for her: How did she first find out that she had MS? What were her first symptoms? How old was she when she had them? What type of doctor diagnosed it? What medications is she on? I have a family member with optic neuritis, sometimes the first sign of MS, that is worried that they might have MS and I am looking for some answers. Thanks.
December 28, 2008 - 9:27amThis Comment
I will be happy to answer any questions that you or your family member may have. I was diagnosed with MS in 2004 at the age of 58 by a neurologist who had ordered several MRI's and a spinal tap. My symptoms were varied for several years but neither my doctors nor I considered the whole picture. I was having bladder and bowel problems, tingling in my feet and hands, extreme fatigue, sometimes dragging my right foot, cognitive problems. I was chalking all this up to getting old before my time and the specialists I was referred to could not find any problems. Then one day I started seeing double and also was having difficulty focusing. I went to an opthomologist who performed eye surgery to tighten the muscles in my right eye. My vision improved but my eye doctor strongly suggested that I have an MRI. I went to the hospital kicking & screaming at the thought of sliding into a tube on my back. It turned out to be nothing compared with the spinal tap that unbeknown to me was in my future. The radiologist who read my films & diagnosed probable MS. I was referred to the neurologist who examined me & stuck a needle the size of one of my mom's knitting needles into my spine. OUCH! The final results came back for secondary progressive multiple sclerosis. It has been a long and sometimes arduous road since then but I have learned a great deal about "silent diseases". Go online to nmss.org where you will learn a lot about the diseases and the support that is available. Please feel free to contact me directly at [email protected] or 912-638-1691.
December 28, 2008 - 2:39pmSarah Gillespie
This Comment
Kelley,
What a kind thing you did. I'm sure that was the best gift you could ever give your neighbor...the gift of your time and concern for her.
Maybe we could put Sarah and your neighbor together so they can support one another. That's what the site is all about.
Big hugs,
December 27, 2008 - 1:08pmMichelle
This Comment
I have a female neighbor who has had MS for years and I never really took time to understand the disease or what she was going through. This women's story has really helped understand how this disease affects women.
Thanks for sharing this experience with us!
Happy Holidays.
December 27, 2008 - 10:28amThis Comment
Michelle, I completely agree. She is an absolute inspiration. Her story has inspired responses on other threads in the community that I wanted to share with you that you can read by clicking here.
Does anyone know of an organization that provides scooters to people who may have issues with mobility?
December 26, 2008 - 10:33pmThis Comment
Hi Tina,
It is truly stories like Sarah's that will help, not only others who suffer from MS, but for those who don't.
Then, there's the role of the caregiver or "givers" in this case. Sarah's been blessed with a husband and a son who are more then willing to do whatever they can to pick up where she left off.Yet, it sounds like Sarah is stiil able to contribute in many ways. Its just different now. Her role has changed but, she is still wife, mother and sister to her family. That will never change.
No one signs up for this. Its just handed to you. And you can embrace it, yet, continue to fight....Or you can wonder, why me??...Which I have to admit...I've asked myself.. why me.. many times after my hysterectomy.
But, you can also do something to help others, while accepting what is and learning how to manage it. Its a tall order and a lot to ask but we can learn so much about ourselves and others. As I've learned through my own health situation, its all part of our own journey.
Sarah and her family are Empowered by one another. That's the true gift. Out of something bad, always comes something good. But you have to be willing to look for it.
In Sarah's case...she will touch many lives by telling her story. She will change peoples lives for the better because she was so willing to share. That's a womderful gift she's given to all who will read her story. We can't change the world but because of people like Sarah, we will see great change. But we need to remember, its one woman at a time.
Thanks for your post, Tina!
Hugs,
M
December 27, 2008 - 1:47pmThis Comment