Lemonade Life

Friday, August 25, 2006

This Is For Joseph

Sandra's post on Friday reminded me of something I have wanted to share for awhile. I think this is the perfect opportunity.

Dear Joseph,

This is why I have hope.


"It could always be worse."

This seems to be the general mantra of people coping with diabetes. This is the soothing phrase they use to calm down the rattled nerves after another outragous high or frightening low, or another playtime put on pause, or simply an interrupted life.

This is how people, at their very wits end, convince themselves that things are not nearly as bad as they seem.

I know someone who has it worse. Her name is Emily. She is 22 years old and she has cystic fibrosis. Alright, I don't actually know her, but I have been reading her blog for the past several months and she is quite the remarkable woman.

Cystic fibrosis, if you've never heard of it, is a chronic incurable disease that causes an excessive amount of mucous to build up in the lungs. It makes it very hard for people to breathe, and to do a lot of the things that we like to do, like walk or play outside or go to the movies. Patients must take several dozen pills and sometimes wear a vibrating chest pack that loosens up the mucous. Some, like Emily, have such poor lung function they must carry around an oxygen tank in order to breath. Simple activities like putting on shoes or walking across a room leave her breathless.

She is 22 and has the lung function of a 90-year-old woman.

Emily needs a lung transplant. She doesn't need a lung transplant like we need a pancreas transplant. She needs a lung transplant like we need insulin.

Early last year, her doctors gave her one year to live. That was 18 months ago. But for the past month, Emily lungs have started to collapse and she spent a month in the hospital.

She was released and is at home again.

Emily has one of the most cheerful dispositions I have ever encountered. She is honest to a fault about her condition, but manages to tell each "adventure" with a humorous afterglow. She is smart, optimistic and bright, just like you. Her disease has not changed who she is, just what she does.

She recently wrote this about her positive outlook:

"A number of people have mentioned to me how they find reading my blog a strange experience, as I have a tendency to write about sometimes quite horrific and/or sad things but then will drop in a touch of humour. This has never really struck me as weird before, but on thinking about it I think we (society) often feel that things are either bad therefore sad, or good therefore happy etc. I was talking about this with Abby the other night – I cannot think of a single time in life when you will get a simple stream of matching emotions. For example, at the most joyous of occasions, such as a wedding (now that I have weddings on the brain due to a dear friend of mine getting married in a weeks time!) there will be moments of tears, and touches of sadness amongst all elation and celebration. At a funeral, there will be a moment of laughter as someone recalls a funny memory or story, perhaps shared through tears of heartache.

Life is varied and complex, and for me that brings part of its great beauty. You can be crying with laughter one minute, and laughing through your tears the next, but I think what is important is allowing that and accepting that as part of life. Also viewing it in this way makes it harder for life to knock you down, when you see it as a collection of tiny fragments rather than one great solid slab, so even with huge black clouds everywhere a sliver of sunshine is bound to creep in somewhere. I try to think like that as it makes it easier to face the whole torrent of emotions which sometimes flood at me on an evening such as this, as it seems more natural that whilst I am elated and content to be at this stage compared to a week ago, I also feel a small ache of sadness at what the events represent as far as my health is concerned. Time is running out. And I have said it many times for the sake of media interviews and awareness raising, but of course sadly it isn’t just for effect, it is true. But I have every single chance of being called tonight as I did last night and the night before¸ and will look forward, take one day at a time, and keep concentrating on small goals, such as getting myself better and of course getting across that finish line!

All we can ever do surely is to keep on keep on, and live it and love it to the best of our ability?"

It's chance, Joseph. Chance is what gives me hope.

The only chance Emily has to find that holy grail, that "normal" life we all keep talking about, is to have a lung transplant. That's it. There is nothing else that will help her.

But us? We are the lucky ones. We wake up every morning with another chance to live the best life that we can. We wake up with a new opportunity to take advantage of every opportunity we have to be strong and happy. We have been given the tools to do the things we want, amazing tools I sometimes feel we wish to discredit because it's not as "perfect" as what we wish we had.

Waking up every morning, new opportunities and chances lay before you. As long as you are alive and breathing, you have the chance for Life, one filled with excitement and fear, courage and confusion. It is our responsibility to take that chance, which makes it all the more exciting and frightening.

Joseph, some people will tell you that there is no hope for a cure. And some people will tell you that there is hope for a cure because the cure is coming in five years.

They are both wrong. Because unfortunately the world has not been given a crystal ball to tell us what is going to happen next. I don't know when there is going to be a cure. Neither does your mom. Neither does your doctor. Neither do the counselors at camp or the people at the ADA and JDRF. No one can tell you when there will be a cure, but they also can't tell you there won't be a cure. Which means there is always hope.

We wake up every morning with another chance for hope, just like Emily. Every day, Emily has the same chance as the day before to get a phone call saying she has new lungs waiting for her.

Everyday, we have the same chance as the day before that a doctor will find the cure. I don't know which day it will be. Maybe it will be tomorrow. Maybe it will be the summer before you start high school. Maybe it will be while you're away at college. Maybe it will happen while you're planning your wedding or playing baseball with your son. Maybe it won't happen until long after we have left this earth, and the cure will be for our grandchildren's families and friends to enjoy a life without diabetes.

There will be a cure, Joseph, I promise. But we don't know when.

It means being patient. It means staying strong.

It means taking the chance, to hope, to believe, to try, to be.

Take the chance.



At August 28, 2006 6:00 AM , Blogger art-sweet said...


I didn't comment on Sandra's post because I couldn't figure out how to say what I wanted to say.

This is it.

Thanks to Banting & Best and subsequent generations of pharmaceutical wizards, we have the opportunity to experience so much of life. Not untarnished by diabetes, it's true, but not without hope for the future.

You may be my favorite heterosexual I've never met ;-)

At August 28, 2006 1:58 PM , Blogger Penny said...

Beautiful Allison!

At August 28, 2006 2:38 PM , Blogger Jamie said...


I want to print this out and save it for Danielle when she's bigger.


At August 28, 2006 9:17 PM , Blogger Megan said...

I couldn't agree more! Eloquently written and very well said.

At August 29, 2006 9:11 AM , Anonymous Jamie Tadrzynski said...

That's amazing Allison. You make people think better about themselves...and it's great. I also have your address, so you can look for a donation for your walk in the mail in the next week or so. :)

At August 29, 2006 4:28 PM , Blogger type1emt said...

Wow. Just wow..
Now I'm crying.
Very well put, that's it exactly.

At August 30, 2006 8:23 AM , Anonymous Betty said...

Allison I have been saying most of my life that "it could be worse" and you beautifully described why.:)

At August 30, 2006 4:38 PM , Blogger Allison said...

Thanks everyone for the comments. Sometimes when I write these posts I stare at the little orange Post button wondering if anything I say means anything or if it makes sense to anyone outside of my little warped head.

It's nice to hear that means something to someone else.

At September 02, 2006 12:59 AM , Blogger Robert said...

your incredibly warped lil head will most assuredly be a blessing to all the rest of us other warped ones!!! You write out thoughts that express what most us would like to live out so eloquently!!!!

At September 03, 2006 9:50 PM , Blogger Sandra Miller said...


Thank you.

I'm sorry to be so late in reading (and commenting) on this wonderful post.

A tremendous gift for my son -- and any other person living with diabetes.

Joseph is asleep (probably for the best, as I'm crying right now), but tomorrow morning I will most definitely share this entry with him.

And Allison-- please don't ever doubt that what you have to say means anything-- to me (and many others, I'm sure) your words mean a great deal.


Post a Comment

Subscribe to Post Comments [Atom]

<< Home