Today is our son's 22nd birthday so I am rather nostalgic. I was diagnosed with MS 7 months after he was born so he's never known me without this damn disease. He was such an active toddler that I had a very tough time keeping up with him especially with the extreme fatigue I felt most days. I remember my mother-in-law giving me one of those child leashes because she knew I was petrified that he would run off and I wouldn't be able to get to him in time. I never ended up using it but I definitely considered my energy level before I went shopping with him. I recall a day when we were walking into one of those big box stores when he was barely 2 at the same time a little old lady was walking out using a cane. I will never forget that sweet, observant little boy looking up at me after seeing the lady and him saying "She's having a bad day, huh Mommy?" I hadn't even realized until that very moment that he was even aware of my illness and the toll that it took on me some days. I see him watching me try to walk across the room now and I know it pains him to see me struggle. I have gotten pretty accustomed to my day to day battle with MS but I will never get used to seeing the hurt, helplessness and fear in his eyes. His worry about me is almost too much to bear sometimes. The only positive that I can see from all this is that our son has grown up into the most compassionate and loving soul who everyone adores.
If someone had told me 20 plus years ago when I was diagnosed with MS that I would get to travel so much at this stage of my life, I never would’ve believed them🌏. As Bruce and I head back home from a life~changing trip to Italy, I feel nothing but love and gratitude for my 2 best travel companions, my husband and my amazing scooter http://www.di-blasi.com/en/mobility-scooter-r30/. This trip would’ve been impossible without either of them. There are plenty of challenges to traveling abroad which I will address in a later post but today I feel like anything is possible with the right travel partners.
If I had a dime for every time someone said " But you look so good" I would be a very wealthy woman by now. I'm not questioning why people instinctively make these remarks when they see me because I don't appear to be sick. MS is an invisible disease for many people but the day to day struggles are very real indeed. I don't blame anyone who doesn't understand this fact because I make every effort to "fit in." I don't want to be singled out or pitied in any way as I live a very full and blessed life. Besides, every person out there is dealing with their own private battle of some kind so the best advice I can give here is to just to treat all people the way you would want to be treated.
As we prepare for our upcoming trip to Italy, I am excited for all the new memories we will make but a little nervous about all the things we cannot possibly anticipate. Although we know our apartment will be accessible, will I be able to maneuver around everywhere else we want to visit? Will there be a bathroom handy when I need it? What will the weather be like? Will it be too warm and if so, will the restaurants and other buildings be air conditioned? How will it be to drive in a different country? Will the road signs be in English too? Will we know enough Italian to get around the countryside? A million questions are swirling around my head but not knowing all the answers is what will make this vacation an adventure of a lifetime. Traveling is one of the best ways to get out of my comfort zone. I will not let my anxiety prevent me from enjoying this amazing opportunity to experience a different part of the world.
Before I was diagnosed with MS I expended so much energy on things that did not matter. Now I am forced to be much more efficient, contemplating in every moment, how many steps it will take to get through my day. Just the constant debating in my head about whether some mundane task is worth the effort can be mentally exhausting. More often than not, I end up talking myself out of doing something that isn't absolutely necessary. It is a continual balancing act to determine whether a chore is worth the effort which is why shopping, cleaning and even running errands can be put off until I have no choice but to "get er done." Thankfully, I can do pretty much everything online these days. I also make lots of lists to accomplish as much as is physically possible because I find that organization and conserving "steps" is key to a healthy and balanced life for me.
I have been especially inspired by the power and strength of young women in sport lately. Last weekend we watched Notre Dame women's basketball win the NCAA championship on a gutsy last second shot. We were rooting for Notre Dame because we had visited the school a couple of years ago with our 6'7 niece Sedona Prince, who ultimately decided to go to Texas to play basketball instead.I have literally had a front row seat to witness Sedona overcome her unusually tall stature and the bullying that accompanies that size difference to become one of this country's premier female athletes. Although it's been a difficult road, Sedona has embraced her uniqueness becoming a role model for young people including her girl cousins, our granddaughters. Sedona also reminds me that it is important to appreciate my individuality and limitations instead of begrudging what others can do that I cannot.
I have a Facebook friend who is in a wheelchair full time and her post the other day got me thinking. She is aggravated by the well- meaning people who offer her help wherever she goes because she is in a wheelchair. This is the part that people who don't live with a disability misunderstand. Those of us who need a mobility device, whether it be a wheelchair, a scooter, a walker or even a cane use these pieces of equipment to take back our independence.I understand my FB friend's frustration at stranger's offers of help because it happens to me on the daily. Most of the time, I just smile and accept what the majority of the time is just a human kindness but please be aware that just because it appears that I might be struggling to walk and get around, I am a stubbornly self sufficient person who shutters at the thought of being treated differently than anyone else. Resist the temptation to offer assistance unless you're asked no matter how hard that may seem at the time.I think that most people with a disability just want to be seen for who they are, not pitied for what you think they can't do.
I know that every day you wake up is a new opportunity to start over again but today I feel especially hopeful. It helps that I feel really good, rested and ready to start another week. I spent this Easter weekend with close friends and my loving family which always puts me in a cheerful place anyway. The trick is always to keep this positivity going even when I don't feel as healthy as I do this morning. A positive attitude regardless of your circumstances can go a long way in changing how you view the world and ultimately how the world will perceive you.
Hello World. This is a blog we created to give any one affected by MS in any way a constructive way to communicate with others going through the same challenges.