more tears than words

Things have been coming at me from every which way, ideas for things I wanted to say in my blog. But I seem to be stuck in this place, and as a result at a loss for words. This post is for Scarlett, for my family, for the families of others battling CF, for other patients, for those waiting for lungs, and those battling for their lives for any other reason. It is my way to get it all out, at a time when I have more tears than words.

With Autumn has come doubt, fear, and the heaviness of my pain. It has snuck in when I was not looking, since it seems like I went from holding it all together, to letting it all fall apart.

As the days get shorter, and the sun feels cooler, I have been feeling my body work harder and harder for air. During the course of last week, I have been so full of sadness and grief that I have been overwhelmed by it. It seems to be a result of so much suffering. When the suffering is alleviated (by drugs, sleep, or just a better day) what results is literally an outpouring of emotion. Mainly sadness, anger, and grief. A terrible combination.


Martin and I have had several conversations recently about all that's happening, this wait that we're enduring. He is my husband, and we need to stay united and understand each other to remain close. So Martin tries to understand. We talk, and we try to rationalize what is happening, and console each other. On September 28th, Martin ripped out a great article for me from the Globe. It was called "Why I'm thankful for multiple sclerosis" by Lorrie Jorgensen. I got a lot out of the article, and would like to share some of it right now. Lorrie, the author, describes the pain that she feels due to her MS. I always think that part of my anger often comes from not being able to explain to people, when they ask how does it feel, how things feel. How CF at this stage feels? Hoes does the pain of not being able to breathe feels? This is what she writes about the fatigue of MS:

"The tiredness is hard to describe. It's not like the fatigue you feel

when you have completed your first 10-kilometre race or triathlon.

I wouldn't know what that feels like, but I've seen the joy and elation

that accompanies the exhaustion runners bring to the finish line and

this isn't the same kind of tired. Runners are rewarded with

endorphin buzzes and recovery time. In the grip of MS fatigue I am

not. It's also not the kind of tired you get when you've stayed up

all night to study for an exam and then aced it. You are still grinning

with the accomplishment on the way to giving yourself permission

to sleep all day – a worn-out, blissful utopia. I know what that feels

like and it's not the same kind of exhaustion. There is no joy or

elation, no rewards or accomplishments. MS fatigue is lonely,

depressing and full of guilt. It is being exhausted just thinking about

doing dishes, vacuuming or knowing there is another day of

work ahead. I have become proficient in the art of negotiating with

myself. When I miss work or a social activity, I obsess over the need to

explain myself to people. Other times I play the silent martyr,

hoping for compassion and understanding that I am unable to ask

for because outwardly I look normal and I'm afraid people will

think there's nothing wrong. " -Globe and Mail, Toronto

http://www.theglobeandmail.com/life/facts-and-arguments/why-im-thankful-for-multiple-sclerosis/article1302212/

I found her words honest and true. They are so true. Though she might have MS, and I might have CF, there is so much that I relate to in what she says. CF breathlessness is heavy, sharp, and relentless. It leaves me lonely, depressed, and frustrated. I can't explain it to people. I also can't explain why I look perfectly fine 90% of the time, yet I am living inside a body that no longer works for me. When I start looking 'unwell', I am usually on the other side of the pain where there is little fight left in me. It is the days that I look 'okay' that I am doing the most fighting. That 'okay' facade is the hardest it seems. Takes a lot of work, both physically and mentally. Yet for many years, when my lung function was 80%, 60% 40%, even 35% I was able to do that fighting and not show the world when and if I had to fight. Part of that of course was that the fight was not as hard as it is now. Today I am literally fighting for my life. Each day I think it can't and won't get harder, but it does get harder. Each of those days I fight out of the darkness. Yet as autumn has come, so has the change that has emerged from this stress. The weakness of my body, the bruising of my soul. I have had to give things up, once again, perhaps not the last thing I will have to give up. I have had to allow more to be done around me. I have had to watch the worry of those who love me. I have had to remind myself that as quickly as my body is shutting down, it will also reignite post transplant. I have had to leave my life to the mercy of random occurrence.

I often feel that by writing about how difficult this process really is, I am letting it win. It being the terror of illness and loss of health. That by letting people know how hard this fight is, it makes me less in control of my life. I know the burden of that. I am a mother, I am a wife. I am supposed to be in control of my life in every way. I feel the guilt and the burden of that every day. But the reality is, speaking out about the stress of this process is my way to reach out to people in this world that have to go through something like this. Something so unthinkable, it's still hard for me to believe I am here, in this place. There is a large misconception, that because we are patients (CF patients, Cancer patients, MS patients....) we are magically given a coping mechanism that others don't have - the Patient mechanism. That we are built differently. That idea makes me resentful, since it outlines an inequality in people. Them and Us. The well and the sick. But it's not like that. After 30 years of life, I still have moments when I think, I can't believe this happened to me? And it's not because I think I'm better than other people, and that it should not have happened to me, nothing like that. I just can't believe that I'm in this situation. Inches away from life. Inches away from death. I'm just a person like any other. A daughter, a sister, a wife, a mother. I just want to continue doing what I was doing; Living my life.

I often reach out to people in my head, at night. I close my eyes and try to fall asleep. I concentrate on my breathing, on the struggle, and think about the millions of people all around the world that are struggling also. By doing that I make the world big, me small, and somehow I simplify my problems and my pain. It works for me. It humbles me and gives me strength to hang another IV bag for the night, do another nebulized mask, give another insulin shot. That human connection frees me from my own responsibility. It's just me, and million like me, I think, doing what we need to do to stay alive.

Today, September 30th, is our 3 year wedding anniversary. We had such a great day 3 years ago. A wedding filled with all the love and joy that we could have asked for. The perfect day! I remember the promises that we made to each other at the alter, and it is those promises, those vows that we are living by now. We are being tested, but as I always say, we are strong together in sickness just like we were in health.

There is so much good in my life, and though I see it and feel it, often it is drowned out by the heaviness of today. I don't want it to be, and I work hard to remember that I am lucky and that good things are coming. But it is getting harder and harder to find physical relief, which means that it is getting harder and harder to find emotional and mental reason. I am ashamed of this sadness I am feeling, since I am so lucky, and have it in me to fight much much longer.

Flowers from Martin for our Anniversary!