Thursday, July 31, 2014


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,


  1. This and your July 9 "Public Perception" post really help me understand my brother's (also pALS) similar decision. Thank you.

    1. then I view this entire effort as a success. Thank you.

  2. You're a class act Conway.

  3. you will always be in their hearts

    love and peace


  4. Tony, my heart bleeds a little as I read your message to the girls. Rest assured they will forever see the courage and dignity of a very brave and loving father. I have never met you Tony but I talk of you to friends and family as though I have...that's never happened to me before. I am nearer 70 than 60 but I can still feel inspired by events, situations and most importantly, are one of those to you and the family...weebobbycollins (frank)

  5. It took a lot of courage to write that and reach that decision.

    I trust your family will take comfort from your explanation. I cannot begin to say that I understand how you feel but I sympathise nevertheless.

    May you take comfort from the presence of loved ones in your life and the knowledge that you have prepared yourself and your family for what lies ahead.

    I hope that none of my poor jokes offended you or your friends. We have little of use to offer you but our time and our concern. I firmly believe that your family will grow up proud of you and the way you are facing your fate.

    Love to all who know you.

    1. the jokes are great! a smile is a sure sign of a strong spirit, and you put smiles on my face

  6. You are being very generous to say so.

    I know a few seriously bad jokes that might make you re-visit that assessment.

    If the actress, Tuesday Weld, married Frederic March's grandson would she become Tuesday March 3rd.

    Teacher: What do you call a person who keeps on talking when people are no longer interested?
    Student: A teacher!

    When I asked my wife what she wanted for her birthday she said 'Just gimme something with diamonds.' That's why I got her a pack of cards.

    Good Night from me

  7. Tony, don't really know what to say but have had a couple of wee chats with your Dad John of late..........So blame him, not me but I am going to send you a couple of my wee nonsensical ramblings if that's OK............ Of most import though, is love and best to you and yours.......... Franny

    Pedro’s plan
    Chapter 1

    The dynamics had changed; Pedro knew that. Nonetheless he was in La Lanterna earlier than he had to be but hey, he liked the feeling of being top dog. Even allowing for the fact that he was still an employee, he was the public face of the company after all, and bhoy did that feel good! Yes the dynamics had indeed changed to such an extent that CFC (Camlachie Fine Castings) were now in a position to call the shots, leaving RIFC (Rusty Iron Foundry Crap) with a less than bullish 20% input with regard to ‘the Glasgow old firm’ business; maybe we could squeeze them even more following their liquidation considered Pedro, after all we are keeping the phoenix company alive but only because it suits our current agenda………’ha ha ha, currant (sic) agenda, nice one, need to remember that for next year’s AGM’ thought Pedro as he selected the biggest chair at the table of thirteen’ in preparation for his guests arriving at the secret soiree of the year…………

    The Barca Mole, promising to send you chapter 2 (next week) if you can suffer my rambling nonsense, God Bless, Regards & Hail Hail...........
    BTW, the wee mhan is a star ( like you) eh!

  8. God Bless You and those around you. You will always be with them and they with you. You're a hero to many, Tony. I'm thankful through my brother, I've come to know of you. --Candice Whitten Jernigan