“I would rather die than being forced to live wired to machines for the rest of my life; never that !”
This is what most of healthy people would say. But when ALS pops up, life rolls the dice for you: this is the beginning of a new game. A mathematical decision is given to you: You can either choose to “fold” or decide to play with this new set of rules; both are reasonable, personal decisions.
But is your decision really personal? Actually, it isn’t, because it will deeply affects your loved ones: it’s reasonable that their views should being considered too.
Most of the time they’ll tell you “It’s too personal, you are the only one who can make this decision”. Most of the time, they will hope that you decide to stay with them; especially if you are the pillar of the family.
And I must confess that even without my muscles, I still have a major role into the lives of my loved ones. They expect me to be strong, that I embody that person who wills to live, and hasn’t let him give up in the face of adversity. I do hope this will inspire them for their own lives. It is an opportunity to help them now in their future trials.
Haven’t we all dreamt about a new life before we got sick? A fresh start under the coconut trees or the seaside; saying hell to everything and flying off to South America or anywhere you want. Well, you are looking at your fresh start; but the destination is less more exotic than you expected: tetraplegia. You’ll have to adapt to it, and thrive to find happiness despite the loss of your former self – and it is possible!
I dunno about you, but as far as I’m concerned every time I used to hear a disabled person saying to me that he/she’s happy, I could never help myself and think: “Yeah right, you’re just a liar trying to appear happy”.
However I’m perfectly sane and feel good in my own skin – happy, at peace. And I don’t think it’s even possible to be more disabled than I am.
Fight for you and yours. Inspire them. And life will have meaning again.