An update from Tim

Posted on: August 8, 2010
5 comments so far (is that a lot?)

Dear Friends,

I know, I know… I probably should have written a while ago. But for those of you who have an inkling of what’s been going on medically in my life, you can probably understand why I haven’t.

As most of you have either heard or guessed by now, I have undergone a tracheotomy and am now reliant on a ventilator to breathe for me. I am lucky enough that I am still, for the moment, able to speak and eat. But along with this massive life change, there have also been positive changes as well. Kaylan and I have found the most perfect house for us. The layout of the house is the most perfect that we could have asked for considering the condition that we’re in. It even has a back yard for Smuchit, which makes him incredibly happy, which in turn makes us happy. I’ve also been blessed with the nurses from Bayada who have been taking very good care of me at home. Nurses like Lorin and Bill, as far as I’m concerned, have become part of the family already.

And then there are the other changes, which I am slowly coming to terms with. I no longer have any functioning limbs. There is some slight movement in my right arm and leg but neither of which can accomplish anything. While I can still eat real food, instead of pumping cans of medical food into my stomach, I cannot feed myself. I can’t control the tv remote and at this point, I can’t control the remote that helps me move the hospital bed. Even though I can still talk, my voice has changed dramatically. Certain words and phrases are nearly impossible to understand. I even have to wear a microphone that looks like something that Britney Spears would wear in order to be heard. There have been a slew of other medical problems that have followed the procedure. I have an unrelenting yeast infection under my scrotum and on my legs. I have a horrible, itchy case of psoriasis, which I can’t scratch. I am in constant unrelenting pain, particularly in my legs, which have an excruciating combination of neurological and muscular pain. Whoever said ALS is not a painful disease is a fucking idiot. I’ve been catheterized more time than I can count on my hands and this continues to happen still. Going to the bathroom has become an increasingly difficult chore and one in which I have no privacy. In fact, I no longer have any privacy at all. I have to live with the constant knowledge that without having someone around that knows how to operate the vent and who understand my condition fully, I will die. Everything feels like a gamble and although I have such good care around me, sometimes it’s hard not to dwell on that. It can be awfully scary living with this disease at any stage but this has been the hardest so far. I knew it would be.

I told myself three months is what I need to figure out how to rebuild myself into what is now my new body. I knew this would be hard, but I don’t regret for a minute that I did it. And I would encourage all ALS patients, particularly those who have a good support group, to take this step. I don’t find it an artificial means of living at all. I still have my full range of emotion in tact. Because I can get full deep breathes, in a sense I haven’t felt this good in ages. I have no doubts that I can fit my personality within these restrictions. As always, I am trying to dwell on the positive rather than the negative. During this time, there have been so many things that have made me happy (i.e. things that you can do to make me happy). I’m still able to eat food and even though I can’t prepare it, which was a passion of mine, the eating portion is just as enjoyable. I’ve enjoyed seeing so many of my friends and have been overwhelmed by the amount who have trained themselves to take care of me in this position. Although it takes a lot of work, being outside on a sunny day has never meant more. Please remember that although I can no longer hug you or shake your hands or bump fists, that it’s in no way because I don’t want to. When you see me, please hug me, shake my hand, stroke my head- because affection from my friends makes me feel safe. I can’t think of anything I miss more than being able to put my arms around someone, especially Kaylan.

So even if you can’t come over and give me a hug, know that I love you guys and appreciate you. The army has given me strength that I never knew that I had. And because of that, I will continue to do everything that I can to fight this horrible disease and stay alive.

Thank you and I love you all.

me

5 Responses to “An update from Tim”

  1. Lori Hedrick Says:

    Tim,
    You are an inspiration to us all. I have grown attached to you (someone I’ve never met) thanks to the Often Awesome Army. You are a living legacy.

    Blessings, hugs and intensely positive energy to you, my friend.

    Lori Hedrick, Asheville, NC (hometown G-boro)

  2. MaryEllen Woodman Says:

    Tim, You are truly a rock star!!! Happy you have found a wonderful house that will make this new chapter that much more easier to experience positive thoughts and experiences!!!

    You Go Rock Star, Tim!!!!

  3. Kitty Foster Says:

    Hi Tim, Wow. I don’t know you or your wife personally but thanks to the Often Awesome web series, I’ve come to love you both. I find great solace in your courage to face the fear and pain. You’ve shined a light of hope for many of us.
    Here’s a song that always helps me feel a little better. Hope it does the same for you.
    http://www.youtube.com/watch?v=MEl44naGjDk
    Truly, Kitty Foster

  4. Ben Barber Says:

    Hey Tim and Kaylan,

    I’ve really appreciated your videos and am inspired by who you are in the face of this incredible challenge. We may never meet but I wanted you to know you’ve made a difference in my life in sharing your story and can count on me to do what I can to raise awareness about ALS. I was lucky enough to meet Ben Byer of the ALS Film Fund before his diagnosis and now have another friend who is living with ALS here in Chicago. Know that as long as I am able, your voices will carry on in the fight to end this disease. Keep on rockin in the free world!

  5. Donna Wolski Says:

    Much like Tim, my husband Ray fought the great fight against ALS but too quickly reached the end only 18 months after his (our) diagnosis. As one of the sole caregivers that Kaylan spoke about in the last episode, I am in awe of your team – and greatful for all you do to raise awareness about this horrific disease. I have watched all the episodes and, though Tim’s conidtion is clearly progressing, I hope to see many, many more over the coming years. Wrap your arms around Kaylan and provide her the support she needs today and will continue to need for a very long time.

    Kaylan – if you ever need to talk with someone who’s been where you are – please conact me.

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