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.
Multiple sclerosis put the brakes on my planned path quite suddenly. For those who don’t know much about MS, the disease causes an otherwise healthy human being to lose the ability to walk as far as he or she desires without tripping on their own feet and falling, to see clearly without having to close one eye in order to focus, to use their fingers without having them close up or start trembling, to use their mind without forgetting how to be creative, make wise decisions and choices or to spell a commonly used word, to be able to make it to the bathroom before it is too late, to be able to walk up and down a flight of stairs quickly and safely, to be able to cook a meal or clean a room without becoming so fatigued that it may take up to an hour to recover, to take a hot bath or shower and be able to walk away on their own or to fill out a form and sign their name legibly.
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”!