ALS April 5th 2015

4.5.2015

Yesterday I talked to Mum on the phone. Susie and I were in the Paris casino and I stepped outside to do face time. Susie has been struggling with our accountant to get our taxes calculated correctly. They are telling us we owe thousands and thousands of dollars, which is a mistake. It is the last thing we need at the moment and is adding an additional stress to our lives that already seem like they are bursting at the stems.

As I deal with the possibility of ALS it is a matter of resilience, how can I get through the low moments, the moments of fear, the reality that I will lose all control of my body and be dependent on Susie for everything. We were talking at breakfast the other morning and it was so good to eat and orange and facing a future were I might be eating through a feeding tube and never get to eat an orange again can be a depressing thought. The only way I can cope is to enjoy that moment and the orange that I am eating. I don’t take this for granted and having this slowly not become possible seems like a living hell. This is where fear of the unknown and all the horrors and indignity reside. These fears emerge from the depths and terrorize me. I still have hope that I will dodge this disease but in reality I know this is delusional. I have not given up hope, but I am preparing myself to live in a different kind of way. I have start reading “Fear” my Thicht Nhat Han and it gives me comfort and an understanding of fear.

Susie and I are flying out of Vegas this morning, we leave at 7 am and then arrive home pack again and then drive to Rochester Minn. tomorrow. It’s about a six hour drive through Iowa and then the testing starts on Tuesday morning at 7:30 am and goes through the day and then continues Wednesday. I will try and give everyone an update on the results.

I am grateful for what I have today.

2 thoughts on “ALS April 5th 2015

  1. Kay Squire says:

    I Love you Max, my Intelligent, Peaceful nephew wth the Courage to Face yourself & the Strength to be Gentle. We have been Gifted wth & by linguistics & your words are an Elixir to me~from the Gods ♥

  2. Kay Squire says:

    WHAT was the Quality of the headache, Maxinus?
    Was it Tensin, was it Chemical, or maybe even Dehydratin
    Dhpd you even bother to ‘linger’ a while to See what Your body might have been trying to Tell you or did you go immediately into a knee jerk Reaction to Get Rid of it & take No Repnsibility for the headache at all? . .

    When i was a teenager i had a headache& my First thought was to lay down and stand on the ‘edge’ of the pain~imagining that the pain was a circle & in my minds eye i saw myslf Fal into the Centre of the circle/Pain & then THROUGH it
    Nobody had Ever told me to do it, I did it Instinctively becoz it seemf Navral & Obvious (to me)
    If You Cannot hear ths voice or Fedl your Instincts then theirs Too much Noise/busyness in your life & THS is the Only reason that people get sick.
    We Must shv down Every Other Voice to HEAR our Own Instincts

    When I went to live in Brunei/Borneo Ths was my Mission~to shuv down Every Other voice that had ever had an input into my life
    ie Mother, Society, Education & EVERYTHNG that i had ever read. I was Commited to doing ths or to die in the process becoz if i could Not have an Original thought then Who was I other than a cut out doll with a pull string in my back spewing out Generic Used up words. . .like every other ‘parrot’ you come across Every day.

    Max, the Soul does not have taste buds & nor does it have Desire~coffee placates the Ego’s Desire; its not a Crime, just call it what it IS
    Aunty
    ♥♡♥

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