Finding the Helpers
It’s a well-known story that bears repeating. Fred Rogers, the host of children’s television Mr. Rogers’ Neighborhood, said that when he was young, his mother responded to scary news by telling him, 'Look for the helpers.'
When tragedy happens, look for the helpers
It is also a true story, one that Rogers told in interviews and on his program, weaving it into a comforting message for kids and a guide for parents who are at a loss for how to handle their children’s fear and confusion when tragedy strikes. He gave parents the words to tell kids it’s okay to be scared and sad, and that mommy and daddy will keep them safe. There aren’t always easy explanations for why bad things happen. Look for the helpers, Rogers’ mother told him. There are helpers everywhere. It’s a valuable coping tool to help kids head off the kind of dread that sits low in the gut when danger and death loom so close. It’s also a good one for grown-ups to use on themselves when tragedy happens.
Our tragedy is MS
In our case, tragedy comes in the form of multiple sclerosis. In the beginning, that is exactly what it feels like. A gut punch followed by a sick feeling of dread and impending death. We are overcome by fear and confusion, as though we are children trying to process the assassination of a world leader, or the protracted suffering and death of a beloved grandparent, or the final illness of an aging pet. But with MS, a large number of us don’t die from it. For most, it is a war of attrition that can last for many decades. So with MS, it becomes even more vital that we find the helpers, the ones that will make our long, long journey feel a little safer, easier, and a little less lonely.
As soon as I became open to the concept of help, I started finding it.
The grocery store
I haven’t yet given in to using one of their motorized store carts, but I know I will someday. For now, I put my cane in the bottom part of a regular small cart and push it through the store. The cart functions kind of like a walker. It can keep my body upright and supported. It doesn’t help if my legs get too weak, but I haven’t had that problem since I started taking Ampyra. A major resource at the grocery store is the bagger. They have offered to help me take the groceries to the car and load it. Sometimes I let them if I feel wimpy that day. If they don’t offer, I know I can always ask for help.
If you told me five years ago that I’d be helped by 80- and 90-year-old women that walk better than I do, I’d have laughed my hind end off. But there it is: one elderly neighbor, Jan, comes by to get me to take a walk with her and she holds my hand over rough terrain and hills--so I don't fall! I warn her that if I go down I'll probably take her with me. You won't fall, she reassures me. And I never have. She can walk a lot farther and faster than me but she always matches my pace.
He lives in the apartment next door to me now, but believe it or not, it took several months after he moved in for me to think of him as a helper! Now whenever I come back from shopping, I text him to help carry in groceries. Within two minutes, the door opens and there he is. He makes it so much easier. Before he was here, I had to go to the laundry room, get a cart, take it out to the car, load it, push it through a heavy side door to the apartment, unload it, then return it the laundry room. My walking buddy, Jan, still helps me with groceries too sometimes. Good old Jan. She's the Tasmanian Devil of helpers!
They know more than God about drug side effects— oodles more than most of my doctors. They’re a wonderful resource that I still forget to use from time to time.
One big flaw of mine is wallowing in my crab hole and not even looking for help. I convince myself that it isn’t there and I’m wasting my time. But when reason prevails, I find the help and promise myself that when next I catch sight of a crab, I should drop it in a pot of boiling water and serve it up with melted butter, a loaf of sourdough and a scotch on the rocks. Which brings me to my next helper.
I’m not recommending you start drinking; it can mess with your liver and cause some dangerous side effects when taken with certain medications. But I do count it among my helpers. I’m not supposed to take it with baclofen, but for some reason, I function just fine. It's probably what spiked my triglycerides from 41 last year to 181 this year, but heck, my cholesterol is 159 with an HDL of 45 and LDL of 78. All other test results were normal. Alcohol numbs my brain in the most delightful ways. I'm so short-tempered sober, it's probably keeping me out of jail.
And there are so many more helpers out there, too. Sometimes they appear as soon as I develop a new need—other times I have to dig for them. Either way, I’m glad they’re out there.
How many specialists did you see before finding "The One"?