Are you a list person? I am, that’s a given.
After wasting time on websites like List Challenges, I thought, ‘Well, how about the ten worst things I’ve done since being diagnosed, with a follow-up on the best things I’ve done since that day in 2005?’ Quotes are added to underline my thinking, ideas or just as some way to kick-start goodness in my life.
Once the 10 best things have found their way onto paper, I will link them to each other here if you want to read lists for a while!
1. Thinking that on the day of my diagnosis at age 32, I would be in a wheelchair by age 34
Fact: A decade later, I am still walking, albeit not in high heels anymore but in sturdy, alternative 20-eye Dr Martens boots.
Quote: “Well, I’m using a cane, so what? So what if they shot me sitting in a wheelchair? That’s life!” (Dick Clark)
2. During the first year of my diagnosis, not taking time to learn enough about MS to ward off certain symptoms. I wanted to prove how strong I was and how much I wanted to work instead
Fact: In between periods of sick leave, I somehow managed to receive an Achievement Award at work in 2007, 1 ½ years after my diagnosis
Quote: “My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” (Stephen Hawking)
3. Falling asleep while sitting outside on a hot summer day, ending up with gruesome sunburn on my chest
Idiot fact: Ending up in A&E and having to apply layers of steroid cream to undo the damage.
Tip: When the information leaflet of your medication mentions that you should avoid direct sunshine, you really should avoid direct sunshine.
Quote: “The sun, with all those planets revolving around it and dependent on it, can still ripen a bunch of grapes as if it had nothing else in the universe to do.” (Galileo Galilei)
4. Discontinue my DMT (Disease Modifying Treatment) without informing my MS nurse
Idiot fact: Rebif side effects still troubled me 1 ½ years after they were supposed to end, and were so intense I missed at least two days of work each week. I contacted my MS nurse about this the day before I was to fly abroad for Christmas.
Fact: One very angry MS nurse, especially since I would be without new DMT for at least another month.
Quote: “Sometimes I say the medication is even tougher than the illness.” (Sanya Richards-Ross)
5. Several years after my diagnosis, taking 1 ½ years to decide if retiring from work would be the best option medically and professionally
Idiot fact: That’s approximately 550 days. Why take that long?
Quote: “There is a whole new kind of life ahead, full of experiences just waiting to happen. Some call it “retirement.” I call it bliss.” (Betty Sullivan)
6. Not accepting friends’ offers for help
Idiot fact: Telling friends I can do it all, I will do it all and I will not ask for help. Ever. Period.
Quote: “Our prime purpose in this life is to help others. And if you can’t help them, at least don’t hurt them.” (Dalai Lama)
7. Not speaking up sooner when I depression hit me in 2014
Idiot fact: “Yes, yes, I am fine, everything’s hunky-dory! Of course it is, why wouldn’t everything be hunky-dory?” when in fact I was falling into pieces.
Biggest help: My mum and close friends who teased out ‘that little secret you are trying so hard to hide.’
Quote: “Good humor is a tonic for mind and body. It is the best antidote for anxiety and depression. It is a business asset. It attracts and keeps friends. It lightens human burdens. It is the direct route to serenity and contentment.” (Grenville Kleiser)
8. Allowing people to criticise or judge me because they refuse to learn about my illness
Idiot Fact: Letting people call me lazy, not doing enough to “cure” myself by using vitamins and herbs etc. Despite not being what I was accused of, I should’ve explained the mechanics of MS, forced retirement and/or actual behaviours more. People are allowed to think what they want, but I should never let those words hurt me that deeply.
Quote: “Nothing in all the world is more dangerous than sincere ignorance and conscientious stupidity.” (Martin Luther King, Jr.) (Yes, MLK, their ignorance versus my stupidity)
9. Rely on an outside, i.e. religious, source for tapping into an ocean of strength and wisdom
My own belief system?Too much has happened to make me want to pray to an unknown entity up above. I physically, mentally and emotionally cannot put faith in something people created themselves, and then see them willingly deny millennia of historic and scientific, tangible data. Please do not get me wrong, if people find strength in religion, that is completely up to them, and I sincerely applaud them for believing in that entity. As far as my family and I are concerned, that entity up above showed me that people skills are not his forte. My strength comes from the goodness of my family, friends and all those who have created artistic, historical and scientific genius, and I especially find strength in Mother Nature.
Quote: “Religion has actually convinced people who there’s an invisible man living in the sky who watches everything you do, every minute of every day. And the invisible man has a special list of ten things he does not want you to do. And if you do any of these ten things, he has a special place, full of fire and smoke and burning and torture and anguish, where he will send you to live and suffer and burn and choke and scream and cry forever and ever ’til the end of time! But He loves you. He loves you, and He needs money! He always needs money! He’s all-powerful, all-perfect, all-knowing, and all-wise, somehow just can’t handle money!” (George Carlin)
10. That endless fight with myself, not listening when my body screams ‘STOP!’. Because I’m still in denial about this ten years post-diagnosis, it’s featured at number ten on my list, in clear hiding behind nine other mistakes
Idiot fact: Falling asleep at the dinner table, sleep for an hour in the cinema, sleeping while sitting up and in other unsavoury positions, being too tired and unable to talk, email or walk.
Quote: “The human mind isn’t a terribly logical or consistent place. Most people, given the choice to face a hideous or terrifying truth or to conveniently avoid it, choose the convenience and peace of normality. That doesn’t make them strong or weak people, or good or bad people. It just makes them people.” (Jim Butcher)
Neurologically challenged by MS and personally by her will to succeed, Willeke is a disability awareness advocate seeking to improve neurological services in Ireland. By highlighting difficult issues that come with a MS diagnosis, she hopes her words and tenacity can bring justice to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.
©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2015. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.