Desperate Questions

Posted by danleone on January 30th, 2009 filed in my father

When my father was diagnosed with ALS, it would have been tempting to run off to WebMD.com or a more questionable site to figure out what ALS was. But, I have never been a fan of this Consumer Reports style of obtaining medical information.

I did do enough research to know that it was a horrific diagnosis. The neurologist referred us to Dr Russel at the Lahey Clinic. He works with ALS patients and can help decide on the best course of action for my dad.

At this point, the only symptoms my father was presenting were some slurred speech and muscle twitches (fasciculations). We originally thought he had suffered a small stroke and we even sat around the living room and laughed as we watched his calves twitch, like they were filled with a bag of worms.

But we had questions. It simply had not dawned on us that this disease was so linear and relentless. Though the left part of our brain “got” the fact that this was a death sentence, we simply could not process it. So, we prepared ourselves for the visit. We held clandestine whisper-meetings at the kitchen table while my dad watched TV as if he was not to know. As if he didn’t know. Meanwhile, he was probably the one that “got it” faster and more clearly than any of us. We sat around the table and came up with a list of questions to ask the doctor. We are notorious for prostrating ourselves at the altar of the Church of Modern Medicine. We sit intently, listening to the sermons and never daring to ask a question. Then, as might be typical in a real church, we go back to the real world and we feel a little hollow that perhaps we didn’t understand something or create a million what-if scenarios to confuse us.

This time was going to be different. We were going to create a unified voice, on behalf of my father, with the sole purpose of making sure his voice is heard, even as it vanished day by day.

I was doing some housekeeping on my laptop last night and came across the original list of questions. Below is a simple cut-and-paste, without edit of what we came up with. Back then, we were frightened, naive and completely oblivious.

  • What can we do to help him today?
  • How can he help himself?
  • Costs / Medicare etc…will we have to sell our house to pay for this?
  • What type of ALS does he have and how is that different than the others
  • What about alternative or natural solutions?
  • What about drug trials? Would he qualify for them?
  • What is my father’s prognosis? How much longer?
  • How do we manage symptoms such as difficulty swallowing and speaking?
  • What is bulbar als and how does that affect his prognosis?
  • Are you absolutely sure it is ALS?
  • Will his death be painful?

I stared at my screen and cried; cried until my eyes were puffy. I
cursed the cruel, fickle gods and recalled every minute of my father’s
suffering. Unlike most crying fits, I did not come out of it feeling
the calm wash over me as the adrenaline left my bloodstream. I rocked
furiously in the recliner and chugged what was left of the wine. How I
didn’t launch the glass across the room is beyond me. I dropped F-bombs
and punched a wall. I paced and dropped to my knees and cried more. 
The light of day did nothing to dissipate the anger, the lump in my
throat, the nausea in my stomach or the tension in my jaw, neck and
hands.

How quickly life has changed since then. The questions are almost a joke in light of the horror of the last year.

Thank you for listening. One day, the pity party will stop and I will “get over it.”

[note: this post is going up without proof-reading or editing or previewing. If I thought about it for another second, I would never post this. So, please forgive me]

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17 Responses to “Desperate Questions”

  1. Maggie's Mind Says:
    January 30th, 2009 at 9:33 am

    I cry reading those questions 14 years after ALS took my mom because many of them were the same questions with the same answers. I haven’t had to curl up and rock in a corner sure that I was seriously just going to not fucking make it in almost as many years, but I remember it with absolute clarity, and my heart is with you. I know nothing I can do except to send a hug and say that it’s OK not to “get over” something like what you’ve witnessed happen to someone you love. I’d worry about you if you were already over it. It does get easier, though, eventually, or at least it has for me and hopefully will for you. Soon.

    Maggie’s Mind’s last blog post..Haiku Friday 1/30/09

  2. The Hurricane Says:
    January 30th, 2009 at 9:40 am

    There is nothing I can say … other than I am so sorry for your pain, for your dad’s pain and the family’s pain.
    Take care of yourself.

    The Hurricane’s last blog post..Grinding up against a pumpkin…masturbating with broccoli….OH REALLY???

  3. danleone Says:
    January 30th, 2009 at 9:44 am

    L’uragano….I am honored that you even visit my little blog. Thank you for taking the time to comment and believe me, it does help. Thank you!

  4. danleone Says:
    January 30th, 2009 at 9:47 am

    Your words have helped me more than you know, Maggie. Thank you so much!

  5. paisley Says:
    January 30th, 2009 at 10:32 am

    desperate times call for desperate questions,, painful answers,, and a bit of cussing and wall banging, to be sure… i am so happy you are sharing this with us,, as this is a journey many of us are yet to take,, and it can only benefit the masses,, you sharing your experience with us..

    paisley’s last blog post..appletini

  6. Lilacspecs Says:
    January 30th, 2009 at 11:35 am

    None of us expect you to just “get over it” magically Dan. You’ve spent a lot of time dealing with this in an insular way, now it’s time to get some of that out in the open air. You have support here, I hope you know that.

    Lilacspecs’s last blog post..Wordless Wednesday – New Years Dinner

  7. topsurf Says:
    January 30th, 2009 at 2:44 pm

    I have read this post two times, cried both times. It is my experience that some of the raw hurt may go away, but the loss I know I can’t get over and to this day still have not. And honestly I think that is ok. This post is so moving, so feeling, so raw. I can only send my well wishes to you and your family that you can begin to heal and lessen the hurt.

  8. terri Says:
    January 30th, 2009 at 10:55 pm

    You may never get over it. You shouldn’t be expected to get over it. You will be forever changed because of this horrible disease. And though you may never get over it, I do hope that time will ease your pain. Until then, don’t feel bad. Don’t apologize for hurting. It is your right.

    terri’s last blog post..Life is Good – January 30, 2009

  9. Amy Whipple Says:
    January 30th, 2009 at 11:40 pm

    Dan – our family had all of the same feelings, frustrations and questions when my aunt, Mary Lou Krauseneck, was diagnosed with ALS. I now work for the ALS Therapy Development Institute in Cambridge, MA. ALS TDI is the world’s largest, pre-clinical, translational research lab working to find a treatment for patients living with ALS today. If you live in MA, you should try to tour the lab. You can reach my co-worker who helps families in the Northeast. Derek Breau can be reached at dbreau@als.net Please contact me directly (awhipple@als.net) if you would like. Your friend in the fight…

  10. Zoeyjane Says:
    January 31st, 2009 at 4:37 am

    If you’re the person I see you as, then know this. You won’t get over it. Because it’s too important to veil over. You’re allowed to be angry, somber, depressed and grieve for how ever long you need to be. No one should ask you, otherwise.

    {hugs}

    Zoeyjane’s last blog post..On Wonders Never Ceasing

  11. Loz Says:
    February 1st, 2009 at 9:34 pm

    Don’t apologise my friend. I read your post and I kept thinking about the Garth Brooks song “The Dance”.

    “And now I’m glad I didn’t know
    The way it all would end the way it all would go”

    I am not a fatalist. I don’t believe that pain is inevitable and something to be endured because there is a better life beyond the veil. I have no idea whether that’s true or not and sometimes I even those with a religious faith that allows them to find succour in suffering. But I do believe that we can find things that will make us better people if we can come to understand how ordinary people cope with extraordinary pain.

    So keep writing because through that I learn as well.

    Loz’s last blog post..Trust is like virginity…

  12. Fox Says:
    February 5th, 2009 at 8:18 am

    Dan, this was a profound, and horrible thing that happened to your dad, and you lived through it with him. You don’t have to get over it. There’s a big difference between pity and support. I see no pity here…just a bunch of people who really feel for you. Take all the time you need.

  13. Karen MEG Says:
    February 5th, 2009 at 9:16 pm

    Dan, you don’t know how much this post has not only touched me, but has given me a punch right into the depths of my pained soul right now. Hence my foul mood, intensified by the lack of vino in the house right now. Perhaps a better thing, as I am alone while the kids are sleeping peacefully upstairs.

    We went through the same process of questions, notes, trying to prepare…but rather than a year, Dad was taken in a month.

    You were absolutely right, my friend…we circled the wagon, we were as prepared as we could have been (just didn’t think we’d have to get it in gear so quickly) and we’re dealing now. But I don’t think we’ll ever get over it. Just as I don’t think you ever will either.

    You’re a wonderful son, Dan, a great man, and there’s no pity for you from my end. Just an awful lot of admiration.

    Karen MEG’s last blog post..Wordless Wednesday – drinking buddies

  14. Karen MEG Says:
    February 5th, 2009 at 9:17 pm

    Let’s rephrase that above, your post didn’t put me in a foul mood… I was there to begin with, I’m pissed because I have no wine to get pissed with :) .

    Karen MEG’s last blog post..Wordless Wednesday – drinking buddies

  15. Marissa Says:
    February 6th, 2009 at 8:54 am

    When my mother died after battling cancer for 3 months — the aggressive chemo treatments 28 years ago weakened her greatly, I went into a fog. I was only 15, but I dont know that age matters when you lose a loved one in such a traumatic way. Watching someone you relied upon for so much diminish at the hands of such a brutal enemy leaves you feeling justifiably angry.
    I didn’t fully comprehend that my mother would never come back until a couple years later. Denial was my coping mechanism. Then, once I graduated and life was uprooted by friends leaving for college, I erupted. I went days not speaking. I punched walls and wished for death myself. I never attempted to take my own life, but the darkness enveloped me and I needed to be allowed to finally grieve. I obviously learned to cope, but learned that the best thing I needed was an ear and shoulder in MY due time.
    I haven’t a clue what my point was other than letting you know you’re not odd in your means of coping. Try not to make sense of it.
    love always

    Marissa’s last blog post..Go away, shmuck, you bother me

  16. Kristin Says:
    February 8th, 2009 at 9:04 pm

    My girlfriend’s husband was diagnosed last May with ALS… we’re all still a little in denial about just how bad it is going to get… so far it is just presenting as weakness in his right hand so it’s easy to imagine that everything is “ok”.

    Kristin’s last blog post..Day 4 of (let’s just go with) this Year – The Literary Grace

  17. meleah rebeccah Says:
    February 10th, 2009 at 8:02 pm

    You are NOT having a Pity Party. You are grieving.

    Also, no one expects to you to GET OVER IT for a very long time.

    Be nice to yourself.

    xoxoxoxox

    meleah rebeccah’s last blog post..Readers Digest Writing Competition

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