The Dark Side

I haven’t been quite sure how to tell this part of the story. I am very convoluted in my feelings regarding it. There are so many facets to health and healthcare. And I have had the unique experience to view my situation from (sometimes) many sides. Patient, mother, nurse, nurse practitioner, research subject, patient, dying, survivor. But I am sure one of the hardest ways to view my experience is through the eyes of my children.

Tonight was a typical evening. I am spent by the end of the day. The evenings are commonly punctuated by pain. Pain that makes you go, “ok, I’m DONE.” Pain that you can’t explain to a person who has never been through this before. This pain makes you feel guilty. It makes you stop in your tracks. It goes deep through you. It feels permanent. It makes you question your future for what you hope it would be. Therefore; a lot of the evening responsibilities have shifted to my children. Now, I know in a sense, that there is nothing wrong with the boys helping out. It is a wonderful way for them to learn responsibility and earn the rewards that they desire. For the most part, they are willing to help, but tonight one of them, “just didn’t want to.” Now, I don’t blame him one bit! Wouldn’t we all rather be watching TV over clearing the table or drying the dishes- especially when you are EIGHT. I’m sorry, but most kids out there do not have as many responsiblities as my children have. I empathize with them. There is now nothing more I would rather do than stand up and do the evening dishes or give a child a bath. But it just isn’t happening at this point. I have to self-talk my way through the end of the day (“One more step till you are at the top of the stairs.” “Just get your clothes off and you can finally lay down.” “Deep breath in, deep breath out.”) There is just nothing more I can give at this point. And apparently, my child felt that he too had reached this point. So, we had a little talk. I spoke of I how would love to do more at the end of the day, but that it just wasn’t going to happen right now. That I needed him and his brother desperately. That their Dad needed them desperately. We all wanted to spend more time together. We all wanted to relax and that without his help, it would take double the time to complete tasks. He was very remorseful. It really seemed to strike him that we weren’t requesting tasks of him just to be mean, but that he mattered. I hope that this stays with him.

But the poor little guy had another lesson to learn tonight. Obviously we had spoke a lot about my back and my pain. We talked a bit about my hip being replaced. He spoke of how much better it would be when my back was all healed and I didn’t have to have pain in my back anymore. Then, I watched his world crumble a bit when I told him, “my back will never heal sweetie.” “You mean it’s permanent?” We talked about what compression fractures were and what that meant for healing. His eyes teared up repeatedly and the comprehension of the severity of what I had been through settled into his heart. And I deeply wished that the doctor that I had asked repeatedly about the worsening of my bone scans and the state of my bone health were here to see his face. And to hear me say, “I am so lucky. I could have been paralyzed. My pain could be worse…” I know that my illness was terribly severe. I know that survival was the utmost importance, but I also feel my Yoda, was an Anakin. And I’m not quite sure whose side he was on.

If just one had taken me seriously.

These inquisitions have weighed heavily on me this week, and weigh heavier still as I ask my sons to clean the dishes, vacuum the floor, put my bras away and bring me my medications.

On my phone’s “lock” screen I have the following words: “God, I know that You love me. I believe that ALL things work out for good for those that love You and are called according to your purpose. I put my trust in You, and will not fear.” (Romans; 8:28, 35-39, Joshua 1:9, Proverbs 3:5) .

For if I do not believe, the counterpart is unbearable.

I dance with insecurity daily. I wonder what my future holds. I cannot let fear hold me.

Please take time to listen and be inspired. The Breakup Song

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