Tuesday, September 16, 2008

What we choose to see

I woke up this morning and the first thing I did was stumble out of bed in time to puke into a bucket I keep close at hand "just in case." It was clearly going to be one of those days. As the episode continued, I paged Bill repeatedly. Sometimes the pages just don't go through. Finally he called me back, "I am on my way." Bill took care of me until my friend Amy arrived. We chatted for a while and then she left me to rest while remaining in the house in case I needed her. I had to wonder to myself if we will soon enter the phase of the, "death watch," during which friends come and sit so that I am not alone. I hope we aren't there yet; I hope today is just a bad day.

Sunday night Amelia and I were watching "Little House on the Prairie" again. As we sat down together on the sofa, she reached out to touch my upper arm. "Your arms are getting so much bigger," she observed, grinning broadly and clapping her hands together. I didn't have the heart to tell her that some of the girth is edema nor the sad reality that my weight gain has not translated into an improvement in my lung function as we had hoped. I couldn't bear to tell her how desparately my heart is trying to compensate for the inadequacies of my lungs. Nor could I share my fears that my heart cannot compensate for much longer.

I wondered how my more robust physique is enough to override all the other signs of my growing debilitation: being on oxygen, needing a wheelchair, hiring a nanny to meet their bus and help prepare dinner. Does she choose not to see all the signs of my demise or is she merely holding fast to the belief that once I gain enough weight, all will return to normal? I worry that she is in denial and that she will be blindsided by my death. But I also don't want to force her to acknowledge a reality that she is clearly unready to face.

Aidan is the opposite. He sees his world going to hell and he's pissed. Two weeks ago during a fight with me he yelled, "I know you are dying; I just wish you would die sooner." The next day when we was calm and snuggly, I brought up his statement. "I know how you feel, Aidan. You know something terrible is going to happen and part of you just wants to get it over with. You needn't feel badly about feeling that way. I feel that way sometimes too," I confessed. "I just want you to die, but then I want you to come back better." I didn't realize that a part of him did not understand that my death was permanent, "Aidan when I die I am not coming back. At least not in this body. You won't be able to see me or touch me." He buried his little head in my lap and cried and cried. There was nothing else to do but hold him.

For BIll and I reality hit home in a real and final way on Friday. The results of the exercise test clearly showed that my heart and lungs are not functioning well, explaining my complete intolerance to activity. On Sunday Bill ad I talked again. "No more tests," I told him, "I am tired of suffering." Tears welled in Bill's eyes, "I love you too much to see you continue to suffer. I just want to make you as comfortable as possible so that you can enjoy your remaining time and we can make some more memories." We talked about moving into acceptance, together this time. It's an important first step.

I vaccillate between wanting more time to make more memories, to tuck the children in one more night, to cuddle with them on the sofa and read. There are days when this minimalist life is more than enough. And then there are days like today, which start off with my head in a bowl and during which I spend hours in bed feeling physically awful and anxious, and I wish death would hurry. The reality is that what I want, or the way it vaccilates, matters little. It will come in its own time

16 comments:

MJH said...

This post made me think of birthing process. I know not what hour baby will finally arrive until it is over with. In that sense, I can understand your impatience. I have two girls of my own and both birthing process was almost the oppostite of each other (home waterbirth).

I do appreciate very much of all what you felt led to write. It is almost like you are writing about a small very private part of my own life.

I admire your husband very much for trying to support you all the way even to the point of leaving work prematurely just for you.

Praying for you!

Lori said...

I am moved beyond words. I think of you often and hope that you can continue to make memories with your family!

desert dirt diva said...

today I can't even beigin to write a comment....so much of everything you say is true......and today i have nothing to say...hope this is just a bad day!

Annie said...

oh michelle. i don't know what to say. i'll keep you in my thoughts and prayers.

always always and always.
xoxo.

Chip said...

Michelle, I echo annie, you are in my thoughts, and like diva said, i hope it is just a bad day.

Ana's World said...

Michelle: I was with my mom when she died in February this year. I'd been taking care of her during her decline from emphysema. My mom had entered the death watch phase and we were waiting for my sister from San Diego to get there. It was just her and I and she was lying in her bed and I asked her if I could get her anything and she said, "Just some water." I wet one of those little sponges that look like lollipops and after I moistened her mouth she said, "Thank you for taking care of me. I love you." Those were the last words she spoke on the earth. Gosh I miss her. I think of you everyday and am hoping you will be okay. Love, Ana

Angie said...

Michelle - when your child acknowledged that you were dying and said just wish you'd die sooner I felt it so deeply. You see, on some level I felt that for my mom and again for my brother after watching them suffer for so long, only by not understanding why I'd feel such a thing, I've been very unforgiving of myself. I'm weeping and writing and feeling all of your frustrations and pain. My prayers remain with you and your family always.

Michelle Lea said...

Michelle,

Thank your for your words and for sharing your story with us. You are leaving a legacy for those that will be left behind. I pray that you get day after day of those extra moments to spend with those that cherish and love you. Life is a mystery to all of us. We don't know where or when we will leave but it we do know it wil happen. You are in my thoughts and prayers.

Tracy said...

You inspire me. I weep for your situation, but I admire your (and your husband's) strength and courage. Bless you and your family. May you have many more wonderful memories and days with them.
I'm praying for all of you...

Mothers heart said...

I would like to send you a gift to give to your children. It is a sterling silver hourglass pendant with a 1/2cttw of diamond dust inside. It is a way to let them know that time is precious and each and everyhour should be treasured. Their time with you is limited but your memory and love will be everlasting.
I hope you will have a chance to make plenty more memories with the ones you love. You have touched so many people with your words. Thanks for sharing such a private part of your life. I think of you often and pray for you and your family. Please contact me or tell me away to send these gifts. It is my way of saying thank you for helping me see the beauty in life and people.

Cha Cha said...

Michelle, I think about you a lot. Not in a creepy stalker-y way, but the way you think about a friend who is going through a tough time. You find yourself praying for them and you don't even realize it.

Please know that there are a ton of non-stalker-y folks praying for you, and thankful for the graceful, honest way you share your experiences with us.

Here's to today being a better day.

SANELA said...

I agree with Cha Cha. You are an inspiration and a friend in my heart. I look forward to your wise words everyday. You have made me a better mom and a better person. Your family and friends are so lucky to have you in their lives and so are we. God bless and lots of prayers.

Misti said...

You inspire me in a way that is beyond words. By the way....you are great at poetry. It is my opinion that all of your blog posts are poetic. I only "know" you through your blog...but, I keep you and your family close to my heart with well wishes and prayers of comfort and healing.
Misti in FL

Imcompossible said...

I've been reading your diary for a bit now and I thank you for it. I don't know how, exactly, but in some way you've helped me with recent passings of my grandparents.
This entry hit me harder than the others. On the day my nanny passed, I was running errands for her medical supplies and had the weight of the should-i-say-goodbye-now decision on my brain when really, I just wanted it to be over. I drove by the place where my poppy is buried. I looked up at the sky and said, "Please poppy.. come take her. She doesn't deserve this". When I got back to my mother's house, I had barely stepped in the door when we got the call my nanny had passed. Although it was a death watch, I don't think anyone was ready for it and sometimes, I think that if I hadn't wished for it, she would have had another day at least. On the other hand, I was the only one who hadn't said goodbye to her because I didn't want my last "I love you" to my nanny to be with tears. It used to upset her to see any of us cry. I feel like I gave her permission to go... as if she was waiting for me.

That was two months ago. It doesn't get any easier but I find more reasons every day to be thankful that I had her and my poppy for so long.

Thank you for everything. Hopefully this day was just a bad one.

Take care.

amymackin said...

I sincerely hope you didn't think I was on a death watch yesterday. I just knew that Bill would feel better about leaving if he knew that I was staying. And I didn't want to burden you with "prattle" when it seemed like you just needed to rest.

But if I offended you in any way, I am really sorry. That would never be my intention.

Love,
Amy

Cat said...

what amazing strength and resolve you have shown - to keep this out in the open - to talk of it - to let others peek into your most intimate moments with yourself and your family...

I sat a long time ago on a death watch with my family for my sister in law, then 32 who died of brain cancer. Your words brought the value of this life back to me and somehow writing 'thank you for that' seems not enough.