It Takes Time by Jean Marie Keenan-Johnston
I’m posting late again today. Unlike last week, today was filled with many opportunities to log on and share some thoughts with all of you. However no matter what I came up with, my brain blocked the way for thoughts to flow out and onto the screen that now sits before me. It wasn’t until just now, as I helped my oldest in the bathroom, that the inspiration came to me. So I hope these wise words from my oldest help you in some way like they helped me…
“Mommy, it takes time.”
With the onset of fibromyalgia, disability from work, and the fight against breast cancer, come many, MANY adjustments. Some adjustments are forced upon you…I didn’t choose to leave my teaching job of over a decade. Instead it was a tug of war battle I didn’t win…my body just couldn’t tug hard enough to pull fibromyalgia across that muddy puddle of gunk. And so I was the loser, the one left laying on the ground covered in the muck that chronic pain brings to one’s life.
Other adjustments were a bit of a softer, and cleaner, landing…those were the ones I chose for myself. My involvement with moms’ groups, my choice to share my life with others through blogging…these were adjustments that at least had an easier start because I made these decisions for myself. Don’t get me wrong. That’s not to say that these were easy changes in my life. Blogging with fibro and chemo fog can be an almost torturous experience! I used to type over 80 words per minute with excellent precision. Now, I’m lucky if I can spell “precision”…heck, if I can spell “if” that I just typed…without having to key “back” more than once in a sentence. (Between you and me, finishing this sentence required five…oops, no, now seven back keys to get the sentence perfect without typos. And the speed surely wasn’t 80 words per minute!) The thoughts don’t flow as easily when I sit down to write. The grammar isn’t as clean as this English teacher’s grammar once was in the classroom. The time it takes to eek out a few paragraphs can make me feel like I just completed writing a thesis! But I enjoy it, and I know from experience that others find some comfort in what comes out of this foggy brain, so I choose to share it.
Moms’ groups hold the same roller coaster experience as blogging. My social side longs for outings with other females who are above the age of five! I sometimes have periods in my life when it’s been months since I saw anyone who wasn’t a relative. But when I change that…when I schedule a weekend with events for myself and the girls, especially those that are back to back, as I’m blowing out my wet hair following a shower, I think to myself, “What have I done? Am I really going to be able to pull this off? How will I feel tomorrow?” My body and my heart are again fighting that favorite game of tug of war…my body is calling out for its favorite hangout place, our couch. While my heart is singing praises to my brain, hymns of thanks for putting together plans with friends I have been missing for quite some time. All the while my brain is counting the ticks on the clock…how long do I have until I have to drive myself home and try to get some sleep? Social events are fun to the person that still exists inside this broken body…loneliness is still something real to the people who must choose to stay home and miss the fun when they have no other choice. But there’s a heavy price to pay when you choose to go out. “The Spoon Theory” written by Christine Miserandino explains it best. Be sure to Google it when you have a moment. While out with a friend, she was asked what it was like to have Lupus, another “invisible disease” with symptoms similar to fibromyalgia (but sadly sometimes worse in that it can become so serious that death becomes a concern for some). “I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.” She grabbed a handful of spoons and used them to illustrate her point. “Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.”
Once you’ve read the essay and understand what the spoons represent (I’ve borrowed enough of your time with this post to include a longer synopsis!), these words are what each of us wishes we could shout from the rooftops and share with those who don’t walk in our shoes: “Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do.” This is my life. This is the life I live all the while wishing for more fun, more excitement, more companionship for my daughters and myself. This is one of fibro’s greatest challenges for me…how do I live “a normal life” when these obstacles are constantly put in my path with the threat of a very painful tomorrow?
“Mommy, it takes time” …my daughter’s beautiful words that she thought she was saying about herself never realizing that her young five-year-old brain was offering a wisdom so beyond her years. My daughter, at five, has had an incredibly difficult time with potty training. Her language has always been advanced, she’s so friendly that she says hello to hundreds of people in a day during a single visit to the mall, and she’s so eager to learn things, she soaks up new skills and information like a sponge on the first time she’s been exposed to it! But potty training is the trophy we all still have our eye on. We’ve seen a child psychologist, consulted her pediatrician more than once, and even had her tested through Early Intervention at our county’s Intermediate Unit, each time seeking any answer that could help us figure out why this is the one thing she just can’t grasp. We’ve struggled to potty train her for over two years now. She showed early signs of interest before the age of three, but nothing ever led to any success, and we decided a number of times to back off and give it a rest for a few months for fear of making matters worse. Maybe she wasn’t ready? we asked ourselves on more occasions than I can count. Once my cancer treatment started, efforts came to a complete stall, and her interest as well as any ability she was able to gain during those previous training periods seemed to regress. We made it precariously through chemotherapy and two surgeries. From May through to sometime in October during that year with cancer, we tried to encourage her to use the potty more. There were sticker charts and rewards of all types and values. Then radiation came in November, and with that, it seemed as if my daughter traveled back to the mind of a two-year-old but only when it came to potty training. She was still a dynamo in other aspects of her life…it was just potty training that held a mystery she couldn’t solve. And it broke my heart that as her parent I couldn’t offer more help.
Tonight, as I praised her for successfully using the potty (when she should have been in bed trying to sleep…a nightly occurrence in our house), as we talked about what she’s able to do as a big girl during the discussion she initiated, she reminded me “it takes time.” Tonight it occurred to me…my daughter is fighting her own battle that could very well be causing her an emotional pain of her own. For two years, she’s been trying to figure her body out, trying to find ways to fit into society despite the stigma of being a preschooler still in Pull-Ups while her cousins and friends are using the potty without difficulty and without accidents. She doesn’t act like she’s different from the others, but I know she’s aware. Her dance teacher told the class that they needed to start practicing wearing their tights without the underpants because that’s just what dancers do, and their recital is only months away in June. As the other little girls were listening to those words as if they were just told something as mundane as peanut butter is what’s for lunch today, my daughter’s face showed panic as she worried she wouldn’t be ready in time for the recital. She knows she’s seeing a specialist at CHOP (Children’s Hospital of Philadelphia) in a few weeks, and when I talk to her, she seems to have accepted the idea of outside help as eagerly as all the other appointments Mommy announced were to help her use the potty. We don’t yet know if the problem is a psychological one, perhaps stemming from a need for control because of my cancer, or if there is a physical problem such as muscle spasms. But either way, I’m confident the doctors at CHOP will find the answer that’s been hidden from us all this time, and my daughter will yet again make me proud of her as she wins this battle with her own body!
The timing of her reminder “it takes time” couldn’t have come at a better moment! I went to my first moms’ night out in months this past Friday, and Saturday afternoon I took the girls to a friend’s house for a Pull-Ups party. Today was as any other “recovery day”…I found work to do resting on my couch because the pain was too great to do housework. As I watched my children play around me, I worried silently to myself all day…will we make the playdate that’s scheduled tomorrow afternoon? Or will we yet again miss another event because Mommy has already scheduled too much in just a few days in a row? As I go ahead with my personal goals for 2013, to find ways to include more time with friends in our lives and find more ways to make myself a happier, more fulfilled mother, I know I’m going to feel this fear again. I know there will be more times that I have to cancel plans with others. I can guarantee I will overbook myself because I was too eager for my own good. But now, rather than looking back on those days with mommy guilt, I’ll replay that conversation with my daughter in my head as I talk myself down from the guilt…”Mommy, it takes time.” Yes, my sweet…and I’m grateful every day that we’re figuring this out together, and for all the time I’ve been given to share with you!