We had an older man in our church (who was about 93 I believe) who when we asked how he was doing and when he would admit to having physical problems would say, “Well, old age is not for sissies!” I think most of us would admit to that.
Living with a neuromuscular disease definitely has its setbacks. Watching yourself slowly getting weaker…living with muscle pain…planning the future around what you can do when you are in a wheelchair (not if but when) has its moments. You know what I mean…moments of frustration, discouragement and anger.
Let’s face it…living with a disability is not easy. But the fact is all of us are headed that way to a certain degree. The fact is we live in a world where we age. What you used to do becomes harder to do and you sometimes pay the price for doing what you try to do.
When you face living with a disability, the information and outlook can be suffocating. Your life is forever changed. You are thrown into a place where you did not plan or want to be. You try to make sense of it all. There are desperate pleas, questions and bargains made with God. While you know God is there, you wonder why this has to be in your life? It is not what you expected.
Emily Perl Kingsley has a poem, “Welcome to Holland” that tells of her experience raising a child with a disability. She likens the experience to planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans: The Coliseum, The Michelangelo’s David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plan lands and the stewardess says, “Welcome to Holland.”
“Holland?!?”, you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy!” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The shock of ending up at a different destination is overwhelming. Not that Holland is a terrible place; it’s just a different place. You haven’t been taken to a horrible, disgusting, filthy place full of famine and disease. It is just a different place than you planned.
It is slower paced and a little less flashy than Italy. You have to go out and buy new guide books and learn a whole new language and you meet a whole new group of people you would never have met.
And after you’ve been there a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…they’re all bragging about what a wonderful time they had there. When friends hear the news about your unexpected destination, they stutter and stammer not knowing what to say or not say. Apologies are given rather than words of encouragement and hope. So you feel isolated, alone and helpless. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever go away…because the loss of that dream is a very, very significant loss.
But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the special, the very lovely things…about Holland.
The fact is I didn’t choose to have a disability. I didn’t want to take a “medical retirement” when I did. I would much rather still be pastoring a church than listening to someone else on Sunday, but it is what it is and I can whine and complain and feel sorry for myself…or look around and see the beauty of things I wouldn’t have been able to see otherwise.
There are some things I cannot do but there are some things I can still do. I have the opportunity to serve my wife by doing some of the cooking and laundry and helping take some of the load off of her. I have the opportunity to encourage many wonderful brothers in the ministry. I have the opportunity to read and study and learn things I honestly didn’t have the time to do before. It has been a reminder that we are not at our final destination yet and when we get there, all we have been through will be worth it all.
I may not have been able to go to “Italy” but I’m learning that “Holland” isn’t so bad. I hope you also are learning to look around and enjoy where God has you at the moment.
His, Therefore Yours,
Gary
