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
Sarah,
Thanks so much for sharing your story and your follow-up. My friend's mother and a work colleague both suffered from MS. It was heart-breaking to see such brilliant, beautiful people's lives change before your eyes. They both, like you, had wonderfully positive attitudes and maintained a zest for life.
We all too often judge someone by what we see before us, but we have no idea what else is happening in their life or how far they may have come.
Thank you for sharing your story and enlightening us!
January 8, 2009 - 10:00amThis Comment
Anonymous,
I am glad that you found my story enlightening. Please share it with your friend's mother and your co-worker and tell them to send it to anyone they want to know more about MS. Sometimes it is safer to send the words of a third party rather than your own. Together we can make the world understand how this disease forever alters an otherwise productive life.
Thank you for your reassuring and caring words.
January 8, 2009 - 11:16amThis Comment
Thanks for the info., Michelle. I will wait a little bit longer to bring it up to him. He has an appt. with his neurologist in a couple of weeks. He just went to the eye doctor today and the doc said his optical nerve was back to normal. The odd thing is he still has the vision problems and pain. The doc thought maybe there could be permanent damage.
January 5, 2009 - 5:08pmThis Comment
Happy to help. Here's the link to the Barrows site. They have a section on Multiple Sclerosis, although I wasn't able to find the doctors name. Still, you can learn more about Barrows and the disease. http://www.thebarrow.org/index.htm
Take care,
December 29, 2008 - 5:10pmMichelle
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Thanks again, Sarah, for the contact info. I will probably be contacting you at one point & I really appreciate how open you are and willing to help. Also, Michelle, thanks so much for helping me find a doctor. It means a lot to me. I can tell this is weighing heavily on my husband's mind right now & he may be open to another opinion at this point.
December 29, 2008 - 4:28pmThis Comment
Sarah,
I'm stunned at the simplicity and clarity and inspiration in your story.
While I have always been "aware" of MS, I was not aware of many aspects of it and was also not aware that it could strike at nearly any age.
I'm so sorry that you have ever felt that you had to "justify" your disability in the eyes of other people. But I also imagine that the "compliment" they give you that "you look fine" happens more because they simply don't know what to say next. Some people may feel that it's nosy to ask you to tell more about your experience; others may be uncomfortable with the conversation at all.
But I think it's also surprise: We expect to be able to see a disability, don't we? We expect to be able to tell why someone is using a disabled parking space, or why they are in a wheelchair. This gets me wondering why. Why would we second-guess someone we don't know? Why are we not even more willing to give the benefit of the doubt?
Your posts are also perspective for any of us, and reminders that just because we are able today doesn't mean we necessarily will be able tomorrow. I think that you are probably affecting a lot more people than you imagine, just from writing what you did.
Have you decided yet about the scooter? I'm interested in what your three fabulous supporters are thinking about it, too.
Thank you so much for your post. You have taught me things today, both about MS and about how I see my own life. There is a great beauty in what you wrote. What a gift.
December 29, 2008 - 9:04amThis Comment
Diane,
Learning and sharing with empowHer has been such a blessing for me this holiday season. It was something of a accident that I stumbled across the web site; however, as with many blessings I receive, I am certain that it is part of God's plan for my journey. There are some holes in that road but there are also ladders to help me out of the hole and back on the road. I am certain that empowHer is a ladder for many.
As for the scooter my husband suggested that I rent one before making a decision. He is often more cautious than I am and that is a good thing. My son questioned what I would use it for but he still thinks I don't need one.
I will keep you posted!
December 30, 2008 - 8:26amThis Comment
Dear Sarah and Anonymous,
First, Sarah, you are something else. Posting your contact information so this kind woman who's trying to help her husband, can reach out to you personally, is what EmpowHer is all about. You truly show over and over again how dedicated you are to helping those in need of information. You are such a great advocate for others. I am so proud of you!! What a compassionate and loving woman you are. Where do you live? I'd love to try to meet you while I'm traveling across the country.
Also, I think you'd be a perfect person to share your story in our "Her Story" section on EmpowHer. If you'd be comfortable with us video taping you...It's such a great way for women to connect with you.... We would come to you. It's totally up to you, though. Don't be afraid to say, NO, if you're not interested. No pressure on our end. I just thought I'd make the offer.
Anonymous, I know a fabulous doctor who is supposed to be the best when it comes to diagnosing and treating Multiple Sclerosis, in the Phoenix area. Supposed to be one of the "Best" in the country. I have several friends who have MS and they love him. He's at Barrows Neurological Institute...I just can't remember his name off the top of my head. I've emailed someone who can tell me and I'm sure she'll get back with me after the holidays. I don't think she sleeps with her blackberry like I do:) Smart lady!!
I'll be back in touch.
Big hugs to you both,
December 29, 2008 - 7:29amMichelle
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Michelle,
I live in St. Simons Island, GA. If you really think that my story might empowHer other women I would be happy to help. I am not sure what you would find to video tape since I am not sure about the scooter. But St. Simons is a beautiful spot & I would love to see you here. I am humbled by the offer.
Sarah
December 30, 2008 - 8:34amThis Comment
Thanks so much for the very helpful information, Sarah, and the contact info. That spinal sounds so painful! Ouch! My daughter actually had to have one when she was an infant (we couldn't bear to watch and they did it in another room), and it was still very traumatic for all. Thank goodness she won't remember it! I am actually trying to pull information for a family member. He has been diagnosed with optical neuritis & while the doctors are telling him he has less than a 25% chance of getting MS, I can tell he is concerned. He has had an MRI and eye tests done. The MRI showed lesions on his brain, but the doctor says they probably are not related to MS. He goes back to the eye doctor and the neurologist soon, but I feel as though we still don't have all the answers. He is frustrated because he still has pain in his eye and can't see well. I live in the Phoenix area. Even though he has gone to a bunch of doctors, I'd like for him to go to a doctor that may be able to give him better answers than he has received already. If anyone knows of someone he should go see, I'd love to have that info. Thanks.
December 28, 2008 - 4:42pmThis Comment