In the original languages (Aramaic, Hebrew, Greek), the word “sin” means “missing the mark.” In my last post written almost two months ago, I spoke of setting an intention to extend loving kindness to my daughter as she faced her health crisis. She moved into my home on June 16, almost two weeks ago. During these two weeks, especially the first week, I missed the mark. I was not at my best. This hospitalization has turned my daughter’s life upside down and, by extension, my life as well.
Her surgery was postponed for two days and she was in ICU a total of nine days before being sent to rehab. While she was in ICU, she experienced ICU psychosis. After the fact, they told us it is common. Wish they would have forewarned me. Seeing her in full-blown paranoia, convinced they were trying to kill her and if I didn’t help her get out of there, I was in league with them was scary. It is hard enough dealing with her myotonic muscular dystrophy. I feared I would be dealing with mental illness as well.
Then after ten days in rehab, she developed pneumonia and was hospitalized for another week before being sent back to rehab where they hoped to wean her off oxygen. They did not succeed and on June 16 she moved in with me. The week before her discharge, exhaustion turned me into a zombie. I couldn’t think straight, I took long naps even though I had slept soundly the night before. I dragged myself day after day doing the next right thing.
I was apprehensive about her coming to live with me. My home is my sanctuary, where I recharge myself with solitude, silence, order, and beauty. She does not share my values and her disease prevents her from maintaining the aesthetics I require. She has lived with me as an adult before, and it didn’t work well for either of us.
In addition, I was nervous because I am not a nurse or a trained caregiver. I felt overwhelmed as people descended on my home with oxygen tanks, compressors, concentrators, and the bi-pap machine she will need to use while sleeping for the rest of her life. They explained how to use it all, but I couldn’t take it all in. They gave us manuals and said we could call if needed. We needed and, thankfully, they were very accommodating.
In the midst of all this, I was faced with the task of moving her out of her apartment. Cell phone pictures helped her make decisions about what to keep and what to give away or discard. I don’t know how she managed the steps for these ten years while her disease progressed and her muscles weakened. It was all I could do to navigate up and down those steps carrying out trash and stuff to my home for her to sort through. One day I could barely carry a heavy trash bag up a flight of stairs and down another as I made my way to the dumpster. When I got there, the dumpster was filled to the brim with branches from the yard work being done. The side door was blocked. I took a step back and heaved that bag with all my might and it went flying into the top of the dumpster. I marveled at my muscle strength. Not bad for an old broad.
My daughter’s first week in my home was an adjustment for both of us. In the midst of all the anxiety, it took every ounce of energy I possessed to deal with all the changes. I grieved the loss of my privacy in the sanctuary of my lovely new home, the loss of my solitude and silence.
I disappointed myself more than once as irritation and frustration crushed my intention to extend the loving kindness she deserves. I couldn’t summon the energy for my spiritual practice. Maintaining serenity and equanimity in the face of this stress escaped me. I was sorely missing the mark. The vicious voice in my head lashed me with the discrepancy between the kind of person I aspire to be and the kind of person I was actually being. In this state, my whole life looked like a sham.
As I sat in my meditation room this morning, the best part of me (my true self within who witnesses my thoughts and actions and knows that is not who I really am) took stock of the way I’m handling this very difficult situation. Even though this week has been much better, I wondered if I needed an anti-depressant to help me deal more effectively. And then the telephone rang and I received a gift from the Universe. I recognized it immediately as a gift of grace.
Glad you are writing again. This too shall end and this stress is temporary! Keep writing and finding your peace in the midst of this chaos!
Thank you for your support through this, Prema,
You talked me through that most difficult week and it helped. To be honest, I can’t see the end and I fear that as her disease progresses, the stress will increase. It doesn’t feel temporary. Writing does help and I’m grateful for the energy that gift of grace gave me to get back into it. But I think accepting “what is” is an on-going process. If only the systems I have to deal with were kinder. That would reduce the stress a lot, but I think that is another “what is” I need to accept. We live in a very stressful world and for the impoverished and disabled among it, it is so much worse. That is what stresses me out the most.
I love you and appreciate your reaching out in caring.
Linda, I relate so much to disappointing myself and the discrepancy between who I am and how I am acting (reacting) with my loved ones. Your writing is so lovely. Thanks for sharing. I love you!
Oh Kathy, thank you for sharing your own disappointment with yourself. I think sharing our shortcomings can help us not feel so alone. We become vulnerable when we do that, especially online. It is so important that we give each other support. Thank you for yours. Love you, too.