As parents, this news can be even more difficult. What do we tell the kids? How and when do we tell them…if we tell them at all? How long will I be out of work? Will I be able to return and perform at the same level? How will this health crisis affect the family finances? What toll will this take on my partner? As mothers, we wonder who can possibly fill our shoes, doing all the things we do—the way we like to do them? What havoc will ensue if we relinquish control to others? And how long is this all going to take?! We have places to go/things to do/people to see! All of these questions can lead to a sense of frustration and helplessness, or the feeling that we are no longer “in charge” of our bodies. There is no reasonable explanation why people who eat well, exercise regularly, drink moderately, avoid smoking, laugh often and have no family history of disease are unexpectedly diagnosed with a life-threatening illness. It is certainly not fair. If all of that effort couldn’t prevent a major health crisis, it can be even harder to believe we can influence the outcome. The lack of control over one’s body, compounded by having to relinquish control to others can be extremely unnerving, particularly for parents, who are accustomed to being in charge of their children, their households, and their jobs.
There is an expression I like which helped me tremendously when I would feel like giving up: “It’s not the cards you’re dealt; it’s how you play the game.” I realized that I couldn’t worry about how crappy my diagnosis was, how much treatment was going to suck, how pissed off I was that I was facing more surgeries, or how awkward I felt accepting help from my friends when they had families of their own. It wasn’t easy watching Steve do all the things I couldn’t do, after working all day. And he would tell you that I was at my worst, naggiest, whiniest self when I had to give up control. These were the “cards” I was dealt, and I chose to “play the game” by making a conscious effort to find ways I could be more in control, however small. In doing so, I felt empowered and less victimized by my disease. I remembered the words of the Serenity Prayer I had heard years ago: “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.” Maybe I had to accept my diagnosis and all that it entailed, but I didn’t have to take it lying down. Here are some tips that worked for me:
1.) Take charge: Before I started treatment, I took the time to create a manual for Jason and the house. I printed off schedules, important phone numbers, and instructions for my mother in law, and placed everything in a 3-ring binder labeled “Nana Sue Control Center”. Need I say more?! Showing others the way you like things done not only makes you feel better, but can be helpful to the people assisting you.
2.) Be proactive: I buzzed off my hair into a cool “Rocker Chick” cut before it fell out in messy clumps. If treatment will alter your weight, pick out a couple new outfits ahead of time that will make you feel good.
3.) Prepare and plan: I stocked the freezer well in advance, to supplement meals made by others as much as possible. Even though Steve had to cook and clean up, I could still plan the menu and let him know what to defrost (I joke that I was still the Brains Behind the Operation!). Don’t worry if you don’t cook—Trader Joe’s has lots of great frozen items!
4.) Visualize the finish line: I created Vision Boards—huge collages of pictures and words that I found inspiring and kept me focused on ultimately getting better and putting this whole experience behind me. If you’re not crafty, you can rip out a few motivational images and stash them in a box, or use a photo album. The process takes your attention off the present (which might be crappy) and redirects it to the future.
5.) Chill out: I listened to guided imagery CD’s almost every night to relax, decompress, reduce pain and visualize my recovery. Choose whatever method works for you; a little spa music, meditation, yoga…just a few minutes a day can relieve stress, which is very beneficial for anyone, not just patients. Share your methods with your caregiver—they need to take a break too!
6.) Looking good helps you feel good: I put on a little bit of make-up every single day during treatment, just enough to make me feel put together. Feel free to streamline your typical routine, but even a small amount of “upkeep” can do wonders for your mood.
7.) Pay it forward: I contacted newspapers, magazines, TV shows and news programs in an effort to create more awareness of my rare disease. The Discovery Channel was the only network that responded, and featured my story on an episode of Mystery Diagnosis. Our local paper ran a story as well. In fact, I still have people contacting me by phone or email after watching repeats of that particular episode (someone just texted me recently that they saw it on YouTube!). Whether you participate in a walk, contribute to a fundraiser, or start a foundation, there are endless ways to “give back”, and have some influence on another patient’s experience.
8.) Make connections: I stayed connected with support groups. If you don’t feel up to attending in person, you can “stay in the loop” via email digests. Online groups are a great alternative to meetings if you are more of a private person. Whether you are looking for information, or wish to share your own experience to help others, support groups are a win-win for everyone.
9.) Balance business with pleasure: Steve and I make it a point to visit a favorite restaurant on the days I have doctor appointments, turning an otherwise gloomy day into an opportunity. Regular check-ups become less stressful, and we actually look forward to the time together. Set aside time to pop into a nearby coffee shop or browse a special store so that you go home on a high note.
10.) Bring it: Refuse to let your disease have control over you--go into this journey with both fists flying! Show it that it chose to mess with the wrong person. You are the only one who can control your mindset--make it feisty!