Weird title I know. So why haven't I blogged this whole entire year? The real reason? Hang in... this is a long one and not all of it's pretty.
Honestly? Truthfully? I'm sure most of you that read this are very aware that last October my husband was diagnosed with Acute Lymphoblastic Leukemia. He is an AMAZING fighter and he was in remission by November and came through 8 rounds of chemo beautifully. In May he had a stem cell bone marrow transplant and is now about 120 days out. Throughout this process he has had the best attitude and has remained a great example of what it means to fight for your life with grace. He has trusted in and heard from God without fail and knows that other things are meant for him. If you want to know what God sounds like, he's happy to tell the story. This illness changed fundamental things about who he is and what he had planned for himself while not changing him at all. (Yes I know that makes no sense but trust me it's true. You can change and not change at the same time.) God indeed works in mysterious and amazing ways.
So back to the why the blog was no bueno part...
It was important for me to stay positive too through all this, but not always easy. We've gotten a lot of compliments on our upbeat attitude and positivity. So why not blog and share that with the world? Mostly, because sometimes I felt like the perpatrator of a great sham. Because at night when I would have time to type, I also had plenty of time to think about exactly how terrified I've been this whole time.... how cheated I felt to have FINALLY found the man I was meant to marry, to FINALLY have a daughter of my own and two step kids any parent would kill for, to FINALLY both have jobs we loved and then to be kicked in the teeth by stupid cancer. All of it was always so close to disappearing and sometimes it was HARD to be positive. So, I cried a lot, I tried to hide all my fears from Mark, and I prayed a lot - feeling that I must be a huge disappointment to God who devotes a fair amount of space in the Bible to overcoming fear and I seemed incapable of making that happen. I genuinely thought about blogging several times, but every thing I thought to type sounded bitter, or pitiful, or like pleas for attention. So instead, I saved those rants for just a few friends and spared the rest of you. I did my best to be positive and while I had my slips, believe me, as overemotional as I am, I still managed to hide most of my sheer panic from most people.
The truth is I hope we were and are an inspiration to others! Admitting to not being superwoman is not easy. It was important to me not to slip up if I could help it and to show people that you can keep moving when you need to. Mark really should be an inspiration to people for real...and I'd really like to be. But the truth is, being the caregiver is hard. REALLY REALLY hard. I thought I had an inkling as I'd done this once with my sister. And that was HARD but a different kind of hard than going through it with your spouse. The fear of being alone or losing your partner can be a special kind of crippling, especially with a small child. That part I did my best with as I could. The need to fix it and the desperate need to know everything about their care and at the same time the need to stay blissfully ignorant so you aren't scared pooless in front of them the whole time are always at war. So what do you do? You project.
I whined about my house instead of Mark's illness. I whined about paperwork instead of my fear. I covered. As a result, little things became great big things. Some people got it, some people thought I was nuts. And EVERY single time I took a minute to wallow about the cancer, I imagined I could FEEL people going, "Ugh. Enough of the depressing crap, we are over it so move along." and I'd hate myself for saying anything. (That still happens sometimes now by the way. Argh!)
What really got to me is what I'm dealing with now... Jamie completely disappeared. I'm sure other spouse caregivers can relate. Everyone asks about your spouse and you recount all of their updates and doctor's notes 50 times a day and you don't want to mind because you are so flattered to have so many people care. Really, honestly you're flattered and humbled and desperate for them to keep asking... but you're tired. When you have a one year old this problem is compounded by everyone immediately following up with asking about how she is taking all of this. About 1 in 10 to 1in 15 times someone has time to ask how you are doing. This is all perfectly normal and perfectly expected... ...but it's not easy.
Then there's the dwindling social life. People know how busy you are but you think and feel like they are just tired of hearing about one year olds and cancer and so you don't get invited to as much stuff. You realize most people aren't doing it on purpose but you see a genuine shift in your social calendar, real or imagined, and when you love to be social that's hard too. People joke less with you because they don't know yet if it's a good cancer day or a bad cancer day, and again, most of the time people do this without knowing.
You, as the caregiver, are invisible...or at least you begin to feel that way. And no one does it on purpose! Let me say that again. I know that no person or thing made me feel invisible on purpose... at all... period. The amazing people in our lives CARE so much and helped me SOOOOOO much!!! They didn't forget to ask about me, in all fairness I'm the least in the line up, and rightfully so, but after a year it has led to quite the identity crisis.
Identity crisis? Really? I know it seems far fetched but it's true. Ellie was 9 months old when Mark got sick. I'd barely adjusted to being a mom and was still accepting I wasn't the spoiled rotten princess anymore. The position had been filled. :) lol! But it progressively got worse as time went on. I stopped being Jamie in my own head and started being Ellie's mom and Mark's wife. Everytime I'd get passed over for a lunch invite or left out of a group activity, or people skipped asking Mark and I to join them out, I began to take it personally. I felt like I wasn't good enough anymore. I still feel that way for more reasons than one and they are all in my head... at least I hope they are. haha!
I haven't put on much weight this last year but my shape has changed and I feel awful all the time. My bad feet are limiting my workouts and I feel ugly and undesirable. I feel lost. Somewhere this year I finally realized that I'm not the cool, young, hip teacher anymore. I feel like I'm the crochety, middle aged teacher who puts up with less crap so the kids don't warm up to me in the same way with the same speed and that added to the hard. Again, my co-workers and students assure this is all in my head but I swear I feel a shift. I haven't had time or money for clothes, pedicures, the spa, or makeup not to mention the time or energy to eat well, so I feel run down and not very put together. So that will be what I work on in the next round of blogs and coming months. I can't fix Jamie until I know who the heck she is outside of being Ellie's mom and Mark's wife. I do know I'm not crazy about right now Jamie. I want to go back to not giving a rip who else liked me or if I was being included or left out. That is my challenge. That Jamie from a couple of years ago liked herself, felt good, and got stuff done. I miss her.
This wasn't an easy blog to write. It's hard to admit your shortcomings but I have high hopes that if I do it, I may help others who get where I'm coming from whether they are a caregiver or not. I am fine the way I am with room to be better than fine. My first mission is to say that until I remember it and maybe even believe it. :) I know Jamie is someone good to know, I just need to meet her again and introduce her to everyone else. In the meantime, I want to be healthier for Ellie so less stress (Yeah right... I teach high school but it's a lovely thought) and more veggies here I come!!! Thank you to all of you for your support this year. You have been wonderful and loved all over us and we could never say thank you enough!!! :) As always thanks for reading. :)