30 Things

Invisible Illness Week

30 things about my invisible illness you may not know

1. The illness I live with is: Lyme disease
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: early childhood
4. The biggest adjustment I’ve had to make is: letting others help me
5. Most people assume: I am fat and lazy
6. The hardest part about mornings are: getting my brain fog to clear
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: my Kitchenaid mixer
9. The hardest part about nights are: finding a comfortable enough position to fall asleep--and stay asleep
10. Each day I take __ pills & vitamins. (No comments, please) at least 50
11. Regarding alternative treatments I: research, research, research, then ask my naturopath
12. If I had to choose between an invisible illness or visible I would choose: not to be ill at all. Actually I am very glad I am not in a wheelchair or not dragging around an oxygen bottle.
13. Regarding working and career: that’s on hold until I am well enough to try again, then I will return to school for a degree in religious studies
14. People would be surprised to know: how much fun I can be when I let my guard down
15. The hardest thing to accept about my new reality has been: not being able to do all the things I used to do
16. Something I never thought I could do with my illness that I did was: find the courage to share my writing with others and find the courage to speak up for myself
17. The commercials about my illness: what commercials? Lyme is an “unacceptable illness” to most of the medical community
18. Something I really miss doing since I was diagnosed is: working and having a paycheck
19. It was really hard to have to give up: my birth family, who refused to accept my diagnosis
20. A new hobby I have taken up since my diagnosis is: painting
21. If I could have one day of feeling normal again I would: go on a long hike in the mountains
22. My illness has taught me: not to give up so easily
23. Want to know a secret? One thing people say that gets under my skin is: about brain fog and confusion: “yeah, I hate it when I misplace my keys too.”
24. But I love it when people: say they have a chronically ill person in their family and I can see the true compassion on their faces and in their actions
25. My favorite motto, scripture, quote that gets me through tough times is: this is the day the Lord has made, we shall be glad and rejoice in it.
26. When someone is diagnosed I’d like to tell them: more important than any pill they will take or treatment they seek, is hope.
27. Something that has surprised me about living with an illness is: there are a lot of us out there
28. The nicest thing someone did for me when I wasn’t feeling well was: brought dinner over for my husband and son
29. I’m involved with Invisible Illness Week because: awareness is very important. If one person is changed by being aware their neighbor is ill, peace and compassion shall reign, on their street at least.
30. The fact that you read this list makes me feel: valued as a friend, neighbor, sister

I Wish You . . . Enough

My eyes are dimming, blurring. Fog is setting in. I can no longer read comfortably, without increasing the size of the text on my screen. Even so, I fear visiting the eye doctor. Will he saddle me with bifocals again, only to have my vision change so rapidly that those bifocals are obsolete before I even receive them? That’s what happened the last time I saw the eye doc, before I knew I had Lyme disease. But is it the toxins building up in my system again? Or could it be a side effect of one of my medications? Or just plain old, old age creeping up on me? I do not know. I fear the worst, but I pray for the best.

My vision makes me not enjoy my photography so much anymore. What would happen if I could no longer see, at all? How much of my creativity could I retain without my sight? I cannot answer those questions, not unless or until I am truly faced with this issue. Still, I wonder. Would I be able to find enough joy in life with yet another limitation?

I must believe.

Vision is but one of our senses. There are five others we often take for granted. There is so much more to life than just what flashes across the television screen, or the computer screen for that matter. There is so much more than the canned sounds coming from your iPod, or if you are old-style like me, your Walkman. Life is more than what mass media tells us it is. In our running blindly around, trapped in our own busy little worlds, we miss so much.

If you were to close your eyes right now, what would be the first sensation you notice? Mine is the sound of the fan behind me. But what more could I notice about the fan? I feel an occasional, soft breeze across my right shoulder. If I listen close enough, I can hear the gentle tinkling of the shell wind chime hanging in the window. Then I hear my Tinker Belle snoring beside me in the chair. Her fur is soft and welcoming, though the added warmth of her being right next to me is a bit much on this hot day. Now I hear the door closing in the kitchen, a familiar shuffle of feet across the tile floor. I know it is my husband even before he says anything to me. I would know it was him even if he made no sounds, even without the faint muskiness of his aftershave. I would know it was him using my sixth sense. I feel it is him, feel his presence; the way you just know someone is staring at you, only in a more pleasant sense.

Now all three dogs start barking at a voice outside the window. There must be a yard sale customer, asking Ken a question. My mind drifts to what they might be interested in today. You can never tell. Some days, odd things sell well; other days, they bomb. The dogs are settling down now. Tink has left the arm of the chair. I hear her distinctive clickety click across the hardwood floors as she chooses a cooler place to nap. If I listen close enough, I can pick out each dog’s unique rhythm as they walk.

Max, our eldest Pug who is almost totally blind, brushes up against my legs. He sits for a spell below my computer tray, resting in the comfort of knowing I am there as he leans on my feet. His blindness causes him anxiety, but with encouragement, he manages just fine, and he still plays with the others. He no longer chases airplanes across the yard like he used to, preferring now just to bark at them as they fly overhead. He is limited some by his lack of sight, and he is old and rather crotchety at times, but he still finds enough joy in his life to wag and howl and dance around happily every day.

That is what I wish, not only for myself but for all of you. Find enough joy, enough pleasure in every day that you might wag and howl and dance—or in human terms, greet everyone you meet with a generous hello, enjoy a good belly laugh often, and dance like every song is your favorite.

I wish you . . . enough.

Beep Beep, Blasted Jeep

Wasn’t I just saying that we shouldn’t make plans, because God can easily trump those silly human plans?

I am beginning to wonder if I am ever meant to leave the bounds of this country, let alone the confines of my four stark white, barren walls. I have never been to Canada. I have never been to Mexico. Heck, I have barely even left the western United States. Arizona is as far east as I have ventured, and that was on a bus tour to see the Grand Canyon. We were staying in Las Vegas and ended up leaving the Grand Canyon early because a snow storm was on the way. It was November, after all. Our bus driver did not want to be stuck crossing the Grand Coulee Dam because of snow or panicked drivers, scared of a few flakes. Okay, maybe it was a big storm. Who knows? We didn’t stick around to see, and we didn’t check out the news when we got back to our hotel, either.

For three years, I even lived a stone’s throw, well a measly ferry ride, from Vancouver, BC, and I never made it across our northern border. My kids have been to Canada, without me, of course. My grandmother, from whom I get my wanderlust, flew cross country—and out of the country—several times a year with her sister, gallivanting all over, that is, until Grandpa put a stop to it. He was rather a homebody. My grandmother had such an adventuresome spirit that, after her first child passed away (premature birth complications) and when her first marriage was failing, she told that first husband that she was moving out west, with or without him. So, on her own, with divorce decree in hand, she moved from chilly North Dakota to God’s Country (aka Washington State). I have long envied her daring and self-assured nature. I have a long list of excuses as to why I have not traveled much up to this point in my life, from finances, to health issues, to trying to raise two kids alone, to anxiety and fear overtaking my life for a time. Sometimes I ask myself, would Grandma have let those things stand in her way? Probably not.

In my last entry, you may recall that I was all excited about taking the Raven on her maiden voyage. Well, those plans are in the circular file once again. The Jeep, our TOAD (towed vehicle, in RV lingo), has broken down. I had hoped that last year, after we sunk nearly $3000 into it, that it might actually be in tip-top shape, aside from needing a new top. It’s a ’92 Wrangler with a pitiful soft top right now. We have been in the market for a hard top, but have not as yet found one. As happens with older vehicles, the clutch went out, as well as another major issue I cannot remember right now. So, our little red darling is once again sucking up all our savings. It’s not enough that my medical issues have repeatedly drained our slush fund, now the Jeep has to take its share? Not fair.

We have been diligently selling off all our treasures, squirreling away all our nickels, dimes, and dollars. We didn’t have much saved up, but it was enough that I felt secure enough to travel, with sufficient funds should an emergency arise.

Bleepedy, bleep. That blasted Jeep. It isn’t a cheap fix. And so, there goes all our squirreled away nuts. Maybe I’m nuts for wanting this life. Or maybe God is just telling us we would be better off with our first trip closer to home. . .