DNR

Dear Cora & Louise,

There has been a huge lapse in time, since I last wrote to you. Sorry. 

I recently wrote a piece in my blog about the reality of life with ALS. I tried to be forthright about my experience. The piece evoked a fairly large response from people online and in person...mainly sympathetic responses. I mentioned you both on one occasion. I said that you were the reason I got up everyday. 

That's not an exaggeration.

At some point, you may struggle to reconcile that statement with the fact I've signed an order saying I no longer want doctors to resuscitate me in the event of an emergency...that I want to be left to die.

I think you may have a hard time with that, because I know I have. In fact, it's fair to say that it's unequivocally the most difficult decision I have ever made. 

I tried to make the decision, at first, based solely on what was best for me. But I found it impossible to keep you out of my mind...milestones in your life that I'm going to miss; grappling with the idea that I won't be there in moments when I'll feel an innate, primordial need to protect you (which is all the time); the task your mum faces in raising you by herself...dealing with the good, the bad, and everything in between...

Then I realized that - such is the nature of ALS - there's nothing I can do about any of that. I'm not sure I'll ever be able to process that. I suppose that's what really makes this so unfair; being helpless.

I've thought back throughout my time with ALS about the attitude I've tried to take while confronting my illness.  I've tried fighting ALS, even though its a losing battle. I've tried to refrain from getting angry, and I've been fairly successful. My thought is that if I only have x-days to live then being angry is a waste of time. I've tried to remain upbeat, but not always succeeded.

After almost three years, ALS has certainly taken its toll on me. 

I've decided that I want to finish my fight without invasive medical intervention. At this point, that basically means that when my muscles are no longer able to make my lungs muster a decent breath, I don't want a hole cut in my windpipe and a ventilator connected: I don't want a machine keeping me alive.

No matter the amount of love I have for both of you, I cannot imagine a life connected to a ventilator as a life where I can begin each day fundamentally happy. 

To be perfectly honest, when my time comes, I think I'll be ready for a rest.

As I write this, my mind frequently drifts off, imagining how you will feel about this decision when you're older.

Do me a favor: don't ever think this decision reflects negatively on how much I love you. You bring light, joy and love to every day. Every day. Try as I might to fight this disease, I wouldn't have the strength to fight it without the two of you.

I love you,

Daddy

La Luna

A great short by Pixar

Fingers and Fists

Earlier in my life, I would have tried to adapt this contraption to hold my beer.

By the time you have a brace on each hand, well, there's a masturbation joke in there, but I'll leave it alone

The braces help me sleep. Over time, I slowly clench my fingers into a fist. At night, my fists end up by my side. During the course of the night, I get in to some uncomfortable positions. I've actually created a yoga position I call "Fat man sleeping on hand."

The braces keep my fingers from clenching and have definitely improved my quality of sleep.

For anyone interested, the cheapest I could find were here.

Adagio from Concierto de Aranjuez

Public Perception

I need to preface this post by saying that I have nothing but love and respect for anyone living through ALS, along with their caregivers, friends, family and medical support staff.

An interesting point arose during a discussion at my clinic visit last week.

We discussed ALS awareness. Particularly, the public face of the illness as projected by national organizations.

These days, Lou Gehrig's disease, at a national level, is synonymous with names  like OJ Brigance, Steve Gleason,  Augie Nieto, and Mike Porcaro. To their eternal credit, each one has taken it upon themselves to start organizations and campaigns to battle ALS.

What do I have to complain about?

My complaint isn't with their popularity or their wealth.

I take issue with the fact that their wealth affords them the ability to have - in the eyes of public - a very functional life, while their ALS is at a fairly advanced stage.

I think this exudes a false image of ALS. An image that portrays pALS at an advanced stage of ALS like independent, pseudo-fully functional people: active business-people, well-traveled advocates...etc...

Again, there's nothing wrong with pALS being active.

But I feel ALS should be portrayed in a much more honest light. A darker light.

People need to have a much more realistic idea of what its like to live with ALS...to live through ALS.

Know that ALS robs you of everything.

It turns your spouse, partner, soul-mate, lover, and best friend in to your nurse. Every bodily function eventually becomes dependent on someone else for assistance. Fuck, it turns your friends and family in to caregivers and victims in equal measure.

When I was first diagnosed, Amanda and I asked the doctor about treatment options. He told us that The Serenity Prayer was the best advice he could give. The serenity prayer.

I couldn't tell you when I began requiring help to get out of bed. But now I need help getting in to bed. That's right; I cant even fall in to bed without help.

I can't move the bed-sheets under my own strength, so I have to wake Amanda for help.

Cora, 6, just found me weeping. I will never forget the distraught look on her face. #ALS can go and fuck itself http://t.co/v129bwzXMh
— Tony Conway (@DontShrink) July 3, 2014

I require hands-on help to stand, shuffle, and sit.

Know that when I fall down it takes a mechanized lift to scoop me up.

Know that every aspect of my personal hygiene is performed by someone else: brushing my teeth, showering, wiping my nose, wiping my ass, cutting my nails, shaving...you name it, and someone has to physically do it for me.

Someone else has to feed me. Someone else has to give me a drink.

I couldn't tell you the last time I put an item of clothing on by myself.

I need a machine to continually pump air in to my lungs while I  sleep.

Keep in mind that with one exception, there are no treatments being researched, let alone developed for this disease.

Going anywhere is a monumental undertaking.

I have a feeding tube sticking out of me, to help me maintain a healthy weight.

I can't move my arms.

I'm losing the strength to hold up my head.

I've lost control of my bladder because of spasms.

I recently shit my pants. My wife  and sister-in-law had the pleasure of cleaning that up. Good times.

My ability to breathe will diminish to the point that doctors will recommend a tracheotomy, and that I get connected to a ventilator. I'll decline that recommendation. I don't want to be hooked up to a machine to merely survive.

My daughters, 6 and 3, are active caregivers...they're also the reason I get up everyday.

My breathing will slowly fail to the point that carbon dioxide levels will become intolerable, I'll lose consciousness, and die. Or I'll fall, and die from the resulting injuries. But my mental faculties will remain intact throughout.

---

Remember, better yet, understand that yes, ALS patients strive to lead active lives, but don't let that veneer give you the misconception that ALS is anything but a brutal disease.

Louise

I must wish a very happy 3rd birthday to Louise. I love you

1000

Today marks the 1000th day since my diagnosis was confirmed at Hopkins.

I think I'll have a drink to celebrate.

Lou