I roll over in bed, snuggled deep in the sheets, my mind slowly become aware of a brand new day full of excitement and creativity and wonder, and then I hear the hissing of the nose cannulas from the oxygen machine that tethers me 40 feet away. It is the never-ceasing pulsing in and out that is the lung, the heart and my lifeline in the center of my home. Blink the sleep away, a smile on my face, and then I remember the diagnosis and hear the doctors voice, “they die in 5 years.” And I find myself immediately expending energy to push that voice out of my head, to cut it from a place deep within where I can feel it rooting.
Death is a real downer at the beginning of your consciousness. Seconds into being awake, I’m thinking of the end.
I discovered only recently that I wear my oxygen backward. It sits in my nose, over my ears, and around my head my hair falling over the back of it, instead of it being in my nose around my ears around my chin and then synched up like a stampede string on the bottom of a cowboy hat. I have tried it the “normal” way a few times. And the confinement around my neck and chin make me feel more suffocated/
This position of wearing oxygen means two things. One, If I’m walking around the house with the 02 and my cord gets caught under a door, as it sometimes does when my hands are full, my head will be whipped back in a quick jerking whiplash motion that resembles the mannequin in the commercials about car safety and seatbelts. If I’m walking with nothing in my hands, I’m winding the lifeline like a cowboy readying the lasso to throw to win his prize. In my “around the head oxygen cord position” I often will drop the oxygen from my nose to it being a transparent necklace that kisses my neck with cool whispers. Some mornings I rip it off of my face. Its life force occupies the purple pillow next to me. I don’t need you- I say as I rub my nose and rejoice in the idea of being awake and still and not requiring air.
Did I breathe through my nose last night, or through my mouth? How low does my oxygen go? How close to death will I be as I sleep in the future?
Stop, I slip the oxygen meter on my finger and see a 99. That is a rarity I say, as I watch and it drops to 97, 98. I rip it off my finger. It was a 99!
I’m rejoicing in a breath. Will I get a bit better before I get worse? Is this the repercussions of pneumonia, or the beginning of the spiral down? One day I will not be able to rip off the oxygen. One day I will need it 24/7. Don’t think that way, let your brain think yourself out of this, believe yourself to health, pray yourself to health. If I can’t do that, is this progression of this disease become not only a burden but a repercussion of my inabilities? She died because she did not have the faith, the belief, the ability to focus.
There is another breath.
Hallelujia. Take charge. Today you have breath. Don’t think about your future filled with slow suffocation. Don’t think about how you have taken automatic reflexes like a cough or a yawn and corralled them to relieve the pain. The control that leaves you sounding like a choking victim during a yawn, or looking like a heart attack victim as you grab your chest during a sneeze and a failed attempt to hold the pain at bay.
Stop.
Take a breath.
Get up.
Must I? How much of my lethargy during the day is pneumonia, how much is depression, how much is an excuse to roll over and do nothing?
Doing nothing is not me. However, It has been a constant state for three months. How am I living without working? Will the financial repercussions soon hit? Don’t think of this. God is providing. You have work. You will get into the studio as soon as the contractor and painters finish. You are still a fast worker. You can provide for many years to come.
Get up!
Take a breath! Rejoice!
Don’t disparage these days and these breaths; it may be the best you get.
Think positively. You may get better breaths, the best thing you can do for yourself is to exercise and eat right. This will help you now; this will be what they look at when considering a lung transplant.
Get out of bed!
My eyes begin to feel sleepy, my body overcome with that familiar feeling of nighttime exhaustion, even though it is first light.
Get up! Get up and at least make that lemon, ginger, hot water that I mix with local honey. The drink that countless videos declare that it works wonders. Is it working wonders? Drink that and get your sneakers on for the treadmill. Get it done early and be thankful you have a day.
If your days are numbered, make the most of today. Rejoice in it and look for other people that you can encourage along the way. Encouraging others takes little energy and is a great accomplishment and contribution.
Thank you, God, for these breaths for this day. Help me to do the best I can. Guide me in my daily actions. Help me to help others.
Pusche