It was an early autumn in 2014 and the news about the end of my world was just around the corner.
The doctor had this hopeless, sad and empty expression they put on when they have to break bad news. In my case - squeezing complicated medical diagnosis into a simple headline. “Breaking news: you have MS and in a few years you will never walk again.” And the only headline buzzing around my head at that exact moment was Ramones's song “I wanna be sedated” so that I could not feel the punch in my stomach that took my breath away on that sunny October day.
In reality it was my husband who got diagnosed with primary progressive multiple sclerosis, not me and I think partners of the loved ones often feel like they got diagnosed as well. And a lot of the time we only see the person with MS, while the wives, husbands and children are invisible in the situation. But in reality, their lives also change.
You shall not pass!
What should be the peak of my husband's career and our married life sort of collapsed into a slow-motion silent movie with us being merely marionettes pulled by the strings of this incurable chronic condition. At least that is how I saw it at first. Once I realized the seriousness of our situation, I had this urge to build an 'ark of biblical proportions' so that we could be safe from the storm that was approaching. While my husband put himself in a sort of safe-mode condition for the time being, my initial reaction was I just wanted to put everything right, fix things like you fix a broken chair, face this demon in the shape of MS like Gandalf faced Balrog at the Bridge of Khazad-dûm in the Lord of the rings and shout: You shall not pass!
Only later did I realize this ark was also a foundation for a more meaningful, creative life and that it was a necessary part of the whole process of accepting the situation. To let the MS in through the front door, make it a nice cup of coffee, get to know it and not fix anything, actually.
The OMS Shaped Ark
The ‘ark’ came in the shape of OMS community. Not only that we got reliable medical sources, but we also got to know a large community of fellow MS pilgrims who were ready to help, offer advice and give hope. Hope – another of forbidden words when you are diagnosed with chronic condition. There is no cure, so there is no hope. I admit I needed OMS more than my husband at that particular time, I was scared more. So, in a way OMS and the 7-step program really put steel on our backs, and we were able to calm down, accept the situation and explore the possibilities of a life within these new challenges.
Embrace the Situation and Reach for Authenticity
So, here's what we have learnt so far on this never ending MS journey:
You have the right to have a realistic hope that life can be beautiful nevertheless. It might mean you are not able to climb every hilltop but there are several other ways to make your life meaningful and rich.
Research your existing bad life-style habits and replace them with healthier choices. My husband has a brown belt in karate, so he uses his knowledge and adds kata's to his exercises. Explore, be authentic and put your »little thing« into all of the activities so that healthier lifestyle modifications become easier to follow. The OMS 7-step recovery program will help you get on board.
Humour & Intimate Life
Laugh at yourself and your situation, even if it is a black humour - it can be so liberating. Laugh at your lousy attempts to have sex – at least now you have a legitimate excuse to buy those sex toys you always wanted to try. Do not shut yourself from your partner, be as open as you can and together you may open the doors to the new ways of intimacy.
Active Participation in Family Life
If a partner can still do things by themselves than let them. My husband is taking care of the dishes in the kitchen (who cares if stuff gets broken from time to time – he feels normal and is contributing to a family life), repairing furniture etc.
You have to be patient with yourself and your partner. That one I am still working on heavily because I am not a patient person at all. I am fast and with this condition everything slows down a bit, it is a kind of a meditative state and you have to learn it.
Spark your creativity and do not let the situation define who you are. Even though you can hardly walk, build up your hobbies and interests. My husband loves retro computing and has multiple web pages and online communities to share his passion on. We help him organize exhibitions and he's able to meet likeminded people who do not see him just through the eyes of his condition.
The bottom line is, life is for the living. So we still dance in our living room from time to time in the evenings – we certainly could not win the prize in ballroom dancing competition but we do our expressive robot-like take on Elton John's ‘I'm still standing’ and do it ‘for better or for worse’ just like we promised ourselves on that hot summer wedding day years ago.