Good f’in morning.

To be brave is to be tired much of the time, half stunned by continual dusk. - Joseph Millar

There are some days you wake up and before your sleepy feet have even touched the cold morning floor, you’re already tired.

For the past month, I’ve been struggling with my blood sugar levels. It seems that no matter how diligently I test my blood sugar or how many shots of insulin I give myself (a few days ago I reached an all-time high of eight shots in one day), I can’t control the peaks and valleys.

It’s not just the emotional exhaustion and frustration of seeing those snaggle-toothed numbers on the monitor; there are tremendously debilitating physical effects too. When my sugar is high my body temperature drops suddenly, I get a severe headache, and all I want to do is sleep and vomit. When my blood sugar is low, I am sleepy, drenched in sweat, and unable to comprehend what is going on around me.

I was diagnosed with CFRD (Cystic Fibrosis Related Diabetes) when I was about nine years old. It was a fluke. I gave a required sample of urine for a sleepaway camp physical and the specimen showed that I had sugar spilling into my urine. I still remember exactly where my mother was sitting and the way her face crumpled when the pediatrician called her that evening to deliver the news. Oh, sweet pee.

From what I’ve heard, CFRD is not supposed to happen at such a young age. It usually happens later on when CF has progressed and deteriorated the body. I’m learning over and over again that the very things that aren’t supposed to happen, happen. People in Joplin Missouri are not supposed to get the roofs blown off their houses. People are not supposed to get decapitated by a tornado. Want to make a list with me of things that aren’t supposed to happen? It would never end.

But the truth is that I’m probably not supposed to be here now and somehow I am. My pincushion body and I are still here, giving CF the finger with a smile. Staying alive and giving CF the finger every single day is the reason why I’m one of the lucky ones. About 150 injections a month and I’m one of the lucky ones. My treatments are endless. Literally. They will never end, as long as I’m alive. Not only will they not end, but they’ll continue to demand more of me and make my life increasingly smaller as time passes. Yet I know with every cell in my body, defective or not, that I’m one of the lucky ones.

I’d be lying, though, if I said that I never get tired. Some days it takes all my strength or the brute force of gritting my teeth and putting one foot in front of another to  make it through the day.

I’m tired of this:

And this:

And this:

I spend a frightening portion of my life trying to replicate nature and make my body mimic what it should be doing naturally. It’s mentally and physically exhausting, and although I know that it’s impossible to replicate nature, I’ll die trying.

My newest source of panic attacks, especially when I can’t seem to control my blood sugar levels, is the thought that my limbs will be amputated. I try to remind myself that it’s only an irrational fear and I stuff down the anxiety that is always threatening to rise and bubble over like a frothy pot of angry steamed milk. Perhaps though, it’s not such an irrational fear.

The effects of diabetes are cumulative and I’ve lived with CFRD over 20 years now. I can already see some of the effects on my skin; I rotate injection sites, but after almost 25 years of this my skin is bruised, tired, and starting to groan loudly every time I approach with a new needle. So I’ve begun to inject the flesh of my inner thighs and ass. Nothing is sacred.

Some years I’ve managed to maintain my blood sugars as tightly as a military bed. There are too many snatches of time, though, that the levels run like wild horses despite my best efforts. I can’t help but wonder what kind of wretched future (blind? limbless?) is being concocted for me by my hurtling, hurting cells in the hazy chemistry lab of my body. What will be the first to go? A toe? A foot? A leg? My heart’s ability to love life no matter what? Maybe this is all a game to see how far we can get dragged, ground to a pulp, cut to a nub, left with nothing but the echo of a cry that life is beautiful. Is life beautiful? Will I love life no matter what?

I won’t love you, life. I will not.

What was not supposed to happen to you?

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Today’s Poem: (click link to read entire poem)

Flying Inside Your Own Body by Margaret Atwood

Your lungs fill and spread themselves,

wings of pink blood, and your bones…

Mama mia.

My mother and I are extremely close. We’re also extremely different. My mom is loud, spicy, Mexican, talkative, overflowing with joy and enthusiasm, and has more energy than the Middle East. She loves to dance, sing and eat chocolate and ice cream. Me? Not so much. None of the above. As a child I’d often ask my mother to turn down the volume of the record player (yes, record player) so that I could concentrate on my book. Despite the differences, it somehow works for us.

This blog has occasionally been difficult for my parents to read. I’ve considered censoring myself but for the sake of getting ever closer to truth (my version of it, at least), I’ve written what I’ve needed to write and forced myself to ignore their potential discomfort. I don’t think either of my parents knew what a sailor mouth their daughter has…

Today I’ve caused my mother even greater discomfort by asking her to answer some of my questions about her experience raising two kids with CF born over 30 years ago. She did it side by side with my father (who I adore and who I am painfully similar to) but because it’s Mother’s Day, I will be focusing on my mom.  She is phenomenal. She wrote much of her doctoral dissertation cramped in the tiny bathroom of my brother’s hospital room.

My intention, other than publicly declaring my love and admiration for my mom,  is to hopefully provide some insight and support for mothers whose children have recently been diagnosed with CF. At the very least, I want you to feel a little less alone in your aloneness. I want to acknowledge you; mothers struggling to do your best with the challenges that have fallen into your warm, frightened, loving laps.  I want to hug all the moms who make this world a better, kinder, softer place.

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How did you feel when you received the diagnosis of CF for your first child?

With the first diagnosis I felt numb. Rationally, I knew it was a sickness, but because I had never even heard the name of the illness, I imagined that my baby would somehow be cured very soon. I couldn’t rush home to google CF. There was very little information and even doctors didn’t know about CF! Your brother’s first pediatrician told us he wouldn’t make it to age 10.

How did you feel when your second child was born and received the same diagnosis?

We had consulted a geneticist before getting pregnant and he (incorrectly) informed us that the chances were slim to none of it happening again. So we decided that with low statistical probability on our side, so much love for the first child and more love to give to a second baby, we’d have another one. When the doctor told us that you had CF, we never looked back. We never regretted having you, CF or not.

Do you feel that a period of “grieving” is a natural and necessary part of the journey with CF?

I would call it grieving if you’re referring to anger together with sadness and limitless fear. If this is your definition of grief, for me it started when your brother got very ill when he was 10 months old and needed to be taken to the hospital where I lost his beloved stuffed animal (Laika) and I lost my belief in the fairness of life. Somehow I could handle the emergency hospitalization but losing that dog broke my heart a million times. It still hurts.

Did CF influence your approach to parenting?

I can’t tell you if I would have been a different type of mom to a child without CF because I never had that opportunity. Looking back, I wish we would have been more open or comfortable with CF  so it wouldn’t have been such a heavy burden on all of us, trying always to appear as if everything was ok. Because of the almost secrecy, I allowed CF to take too much energy, prominence and space in our lives. By trying to pretend it wasn’t there, we allowed it to define who we were. I also think I was too lenient.

How did you manage your fears and worries? (You always made me feel that everything would be okay, that everything was okay. Now that I’m a mother, I know what a hard thing this is to do when you’re falling apart inside).

I have never managed my fears completely but I have NEVER lost hope either (except once for a short period, before your brother’s transplant). I’ve done everything to deal with my fears: cried till my eyes hurt, prayed a lot, bargained with God a lot, banged walls and hollered, talked non-end about it, kept silent about it. In order to deal with it I have kept busy with work, dance, art, too much bad food,  and I have been helped by a husband that will listen and doesn’t cry when I need to cry, having a mother who shares the tears with me; having one sister and a few friends who try to understand.

What is the worst thing about CF for you?

There is not a single worst thing about CF for a mom. There are various: my guilty feelings because it is a genetic disease, my impotence of not being able to make it “all better”, no matter how much I try; coming to terms with the randomness of life’s “justice”; and of course witnessing how you and your brother suffer when you don’t feel well, when you get bad news, when you’re frightened.

Is there any good that you think has come from us being a family with CF?

Yes, believe it or not, there are good things about being a family with CF. We don’t take time, health, laughter and life for granted. Every day counts, and every good thing that happens is worth celebrating. Not many families live like that. Most people live as if they are owed a good life. We have been VERY lucky to be aware of the miracles that have been given to us, such as the success of your brother’s transplant, you getting pregnant and giving birth to your angel, being witnesses to how courageous a human being can be (as we have watched you and your brother); witnessing the love that S has for you. Lots of sadness, but how many families laugh and love the way we do? Both somehow come from the same place of deep love for each other and for life.

How has CF affected your life personally (not just as a parent)?

For a long time CF defined my life. When I used to wonder “Who am I?” my first definition was always a CF mom. That definition always made me feel different from other moms and I hated every mom that had a healthy child. That has changed with time. Now I am a wife, mom, grandma, daughter, dancer, sculptor, etc. And, oh that’s right, my kids have CF.

If you could, what would you tell mothers and fathers of children who have recently received the diagnosis?

Today’s parents have a lot to look forward to in terms of research and many new treatments in the pipeline. Even though CF is a genetic disease, it’s NOT YOUR FAULT! Nobody chooses to give an illness to a kid. It is simply life happening. So if you need to, get psychological help ASAP and get over the guilt. If your child needs to be hospitalized, do whatever you can to have a family member there 24/7. You can (and we did) prevent errors from happening if you’re there and you’re watchful. A support system is very important. Even though everyone else seems to have healthy kids, don’t lose your friends; you’ll need them. Do not despair, there is ALWAYS hope. Doctors know a lot, but they don’t know everything. Nobody knows what the future holds. Take time to take care of yourselves (mom and dad) and find activities that take your mind, body and spirit away from CF (yes, fundraising and outreach are important but don’t let CF become your entire life). Do not forget that you and your child are alive right now- don’t lose the now because you’re worried about the future.

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Thank you for answering my questions Mom. Thank you for being my Mom. I love you and today’s poem–my little offering– is for you.

Happy Mother’s Day to anyone who is a mother and anyone who has a mother.

(click link to read entire poem)

The Lanyard by Billy Collins

The other day I was ricocheting slowly

off the blue walls of this room…

A day at the zoo.

Well, not a real zoo, not the kind with funny monkeys, ice cream, and tigers ready to pounce at every turn.

I’m spending the day at clinic for three consecutive appointments, various doctors and nurses, tests, prescription lists, insurance, blood, spit, stethoscopes, and valiant attempts at communication from both sides of the cage. It often feels like a zoo, and while I’d rather be the graceful gazelle, I’m usually the angry gorilla, pounding thick fists against the wall. I do this every three months, more if I’m not well, leaving my daughter behind each time with the fear that they’re going to keep me, as they sometimes do. The bars on the cage grow stronger.

For the first time in, well, ever, I’m tentatively at ease because despite daily brain freeze sinus pressure, I’m feeling better; we’ll see if the numbers agree. Also, I’ve decided to set aside the emotional upheaval brought on by clinic visits in favor of an objective, journalistic approach to clinic. Why the sudden need for neutrality? Because I’m bringing you to clinic with me, and we can’t have the gorilla freaking out (it happens a lot: wild, guttural noises, elephant stomping, papers flying everywhere, tears and shrieks).

So: there will be calm. therewillbecalmtherewillbecalmtherewillbecalm. The plane leaves at 9 am.

Yes, that’s right, we’re flying to the doctor. Most normal doctors (the doctors that z pack you and send you on your merry way til next year) run screaming when they have to treat a CF patient. They don’t know how, and don’t want to learn. I don’t blame them. Then, there are the doctors who are willing to try, but begin every appointment by regaling you with stories of all the CF patients they’ve known and lost, coupled with genuine amazement that you are somehow still living. These are the ones that tighten my jaw. So the mileage, the energy, and the various modes of transportation to get to my doctors, specialists who for unknown reasons have chosen to use their lives helping my CF mates and me live longer, stronger, and better, is worth it.

I’m leaving now, and I’ll post my objective (not emotional.. not emotional!) documentation in the next day or two.

Welcome to the zoo. Welcome to the jungle.

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Today’s Poem: (click link to read entire poem)

Hope by Lisel Mueller

It hovers in dark corners

before the lights are turned on…