These are flower photos I took and edited with my iPhone4S. I’m continually amazed at technology, at the way it not only links us to friends, family and people around the world, but also how it allows us to be creative in new and fascinating ways. Over the past few months I’ve been having some health problems and as a result the ability to connect and create with minimal exertion on sites like Facebook and Instagram has helped me feel like I’m at least somewhat still a part the “big picture” of my currently slightly diminished life.
As anyone who has been sick for a long time or suffers from a chronic illness can tell you, going to doctors, being poked and prodded and tested week after week, waiting for results and that elusive magic pill that will turn things around can be very isolating and discouraging. You feel like your body has betrayed you. You see the color and energy of life moving swiftly by all around you, without you, and sometimes you’re afraid. Afraid you won’t get well, afraid you will but you won’t be able to regain your footing and find your place again in the ongoing drama of daily life. But perhaps what you fear most is that it doesn’t matter either way. Because whether we are sick or well, productive or weary, sad or joyful, we all so want it to matter. We want to matter.
I’m happy that I can say I do feel better this month compared to last so perhaps there is a light at the end of this gloomy weight-loss-tummy-ache-tunnel. In the meantime I will keep my skinny butt moving toward that light with a little help from my docs, the love of a caring husband, the beauty of the flowers in my garden, a dash of patience, a sprinkle of hope, and last but not least…a pretty pink iPhone in the palm of my hand.
“Imagination is the true magic carpet.” ~ Norman Vincent Peale
This week’s Illustration Friday topic is “stripes”. I pulled this simple angel sketch from my journal because I thought her hair and wings fit the topic. I haven’t been feeling so great this week, it always scares me a little when I don’t feel well. I worry that I’ll begin sliding down that slippery slope back into full blown Chronic Fatigue Syndrome. I hate that name, Chronic Fatigue Syndrome, most people in the CFS community do since fatigue is only a small part of the illness. The CFIDS Association of America has been around since 1987, advocating and educating doctors, patients, and the public about the disability and suffering caused by CFS. In a way, they’ve been an angel to people with the illness, especially years ago when I first got sick and no one knew anything about it. I feel a bit better today, so hopefully this past week was just a little bump in the road. It is nice to know though, that we have angels like the dedicated people at the The CFIDS Association looking out for us, and maybe, just maybe we have angels like the one in my drawing standing beside us, whispering hope and touching us with grace when we need it most.
“If you can’t hear the angels, try quieting the static of worry.” ~Terri Guillemets
This is a swine flu concept I did for iStockphoto. My husband and I haven’t gotten the vaccine because we’re pretty sure we had the bug in May during the first big wave of the pandemic. It was a nasty one that took me weeks of steam showers, hot tea, and plenty of rest to totally shake!
Teaser Tuesday asks you to : Grab your current read, Open to a random page, Share two (2) “teaser” sentences from somewhere on that page. I’m reading The Book of Lies by Brad Meltzer. I don’t read a lot of mysteries or thrillers but sometimes I think it’s good to step out of your reading comfort zone and shake things up a bit. I’m really enjoying the read and when I went to his website I also enjoyed his snarky sense of humor! He has fake movie trailers and in one video he’s got family members reading some crummy reviews of the book. It’s totally hilarious, you gotta love a guy who can laugh at the critics! And if those are real reviews I certainly don’t agree with them. I plan to read more of his books, he’s an interesting guy and a good writer.
My teaser sentences are from page 44 where he writes, It’s so damn easy to judge. But Paulo knows from his niece, no matter how much you want someone back in your life, sometimes it’s the letting-them-back-in part that hurts the most. I reread that second sentence several times. It struck me how true it was, and not just about letting people back in, but about letting anything back into your life that you associate with heartache. Years ago, I had to stop painting because I was very ill. When I finally regained my health I didn’t go back into the spare bedroom where my easel was set up for many months. I thought it was because I was afraid I wouldn’t remember how to paint, that I may have lost the ability to be creative after going through so much physical and emotional hurt.
One afternoon, I finally got up the nerve to venture into my little studio. I opened a can of turpentine and squeezed a selection of oil colors onto my palette. Facing a blank white canvas, I breathed in the scent of my paints, dipped my paintbrush into a swirl of cadmium red, and promptly burst into gut wrenching sobs. It was at that moment that I realized it wasn’t the fear of not being able to paint that had kept me away from my art, it was the fear of losing it all over again if my health problems returned. I had grieved long and hard after first losing that part of me, did I really want to let it back in? So I agree with Mr. Meltzer, that simple little sentence says a whole lot about human nature and I imagine most of us can relate to in one way or another.
For many months now my family has been struggling to understand why my seventy-four-year-old mother was so sick and what we could do to help make her better. She has a somewhat rare form of COPD called bronchietasis, the cause of this illness is not well understood and unfortunately the treatment for it has been limited and unsuccessful. For quite some time we have been walking that heartrending line that those with serious illness and their families must walk, that difficult path where hope and acceptance meet and retreat then meet again. My mother has grown weary of the dance. She has stepped over to acceptance and she is asking us to do the same and so we are going to begin hospice care.
I sit and talk with her about her death now. She wants to know how long it will take. I tell her I don’t know but we will do everything we can to keep her comfortable. She says there are things she wanted to do, get organized. I tell her that she is still here and we can still do them. She says she wanted to write each of her children a goodbye letter. I tell her that she can dictate the words and I’ll write them down for her. She says she wanted to clean out the desk and throw away old bills. I reassure her that my dad will take care of that. She told me that her little dog Ellie is going to miss her and I said, “Yes, you’re right mom, she really is going to miss you.”
I could add a few words of wisdom about now, something about it all being okay because it’s the natural cycle of life, or she’s crossing over to a better place, or she’s had a good long life. And sometimes that is how I feel. But the truth is, most of the time it’s not okay. My mom is dying and any way you look at it…it is simply unacceptable.
*I wrote this post the day before my mother passed away. It’s been two months now and I just came across it while cleaning up my draft files on WordPress. This Saturday we are having a big open house in honor of my mom and I really do look forward to seeing family and old friends we don’t often get to see anymore. I’m still searching for those words of wisdom that will make everthing okay, but the thing is I want to lay my head down on my mother’s lap, feel her stroke my hair gently, and hear them from her.
Some pics from the PKD Walk on Saturday. We had perfect September weather and the volunteers did a great job organizing everything. Some of the walkers had kidney disease themselves, some walked for family members and friends with it, and others walked in memory of a life lost to kidney disease as we did. That’s Meagan’s mom Debbie next to Andy, Meagan, me, and Doug (a.k.a. Mr. bookbabie) holding pinwheels with Kylie’s name on them. We raised over $1,200 in just two weeks, thanks to all of you who donated! It was so inspiring to see so many people get together to make something positive out of adversity and heartbreak:)
It isn’t for the moment you are struck that you need courage, but for the long uphill climb back to sanity and faith and security. ~Anne Morrow Lindbergh
How did we spend our Easter weekend? Why shoveling the driveway of course. That’s my backyard, not last month, this morning! We had family over Friday night for an early holiday dinner and that’s what they had to contend with getting here, 8 inches of snow and rush hour traffic. We are nothing else if not stubborn here in Michigan and they came anyway. When my sister-in-law from Louisville was getting her son Evan’s winter coat out for the trip he complained, “No, it’s spring!” And she answered, “Not in Michigan!” Little did they know what was really in store for them. Joann was just considering the cold, she left their boots at home and the kids ended up trudging through the snow in their tennis shoes last night.
It was good to see everyone, although my mom wasn’t up to coming and that bummed us out. Like most moms she is the Queen Bee of our family and we missed her terribly last night. I would take all the bad weather Michigan can dish out and never complain again if I could just have my mom healthy again. Joann’s sister Jackie is also very sick and has been in our thoughts and prayers lately. So come to think of it, who cares about the stupid weather. From now on each time I start to whine about the weather I’m going to stop myself, dig up something to add to my “blessing list”, and say a prayer for family members who are dealing with serious illness right now.
Health is the thing that makes you feel that now is the best time of the year.
~Franklin Pierce Adams
I did this painting some years ago when I was sick. I really wanted to be out there on that beach, out of my body and away from the life that I was living at that moment because it was filled with loneliness and illness. Not aloneness, but loneliness, there’s a difference. I was married and had two beautiful young children, so I wasn’t alone. Yet as my health failed and weeks became months and those months dragged into years of living in a body that had become a kind of prison, I felt isolated. I was like one of those mimes in an invisible box, I could see the life that I wanted to be part of happening all around me, but I couldn’t quite get to it, it was just out of my reach.
That is what chronic illness is, what it does to those living with it. If you’re lucky and have a supportive family and good doctors some of that burden is lifted, but even still, it is a journey that wears on the body and on the soul. Nietzsche once wrote, What does not kill me makes me stronger. I would sometimes think about those words back then, and the truth is, I sure didn’t feel like I was getting stronger. I think that what life’s trials really teach us is that we can survive. We can do what we never thought we had the strength or the courage to do. Are we stronger? Maybe, maybe not. But as we step out of that box, battered and scarred from the crossing, we take with us the wisdom that no matter how dark the day the wings of hope can take us anywhere we want to go:)
For I am bound with fleshly bands,
Joy, beauty, lie beyond my scope;
I strain my heart, I stretch my hands,
And catch at hope.
~ Christina Rossetti