ALS Heroes

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This topic contains 4 replies, has 4 voices, and was last updated by  Avesjager 5 days, 17 hours ago.

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  • #8460

    BrendaD
    Participant

    Do you or someone you know have ALS? Have you lost a loved one to the disease? Pay tribute to the ALS heroes in your life and share your stories of hope here.

    #8463

    Manya
    Member

    MY HERO

    Today the kids are playing happily in our pool.
    “Pretend I can fly & I have x-ray vision too!” says Gwen
    “Ok, but I can become invisible” says Sophia…
    Now I am thinking if I had a choice, what would I want my super power to be?
    I have always wanted to fly, but to become invisible?
    That would be pretty darn handy.
    I think of Harry Potter and his invisibility cloak.

    Then I think of Judi.

    It seems this woman already has super powers.
    In all the years I have known her, she has tried to be positive and optimistic.
    Even with her only son being severely autistic, Judi will greet you with a smile, and ask how you’re doing.
    She will earnestly want to be happy and share some good times.
    She is not openly bitter or self pitying. She doesn’t let hurt engulf her.

    It’s pretty amazing.

    I know Judi gets overwhelmed, and worn out.
    I know she gets frustrated and tired of having to continually care for, and monitor her son, who is now a young adult.
    A son that doesn’t sleep through the night,has OCD, a son who can be aggressive and abusive at times.
    A son who cannot speak.
    I know she gets sad and scared, or ready to explode.
    But rare is the time Judi utters a complaint.
    I mean it.
    We’ve had discussions and she’ll admit only after I ask, that she is exhausted. Yet she’s also quick to try and live in the moment, to enjoy what she has in front of her.

    It seems she has more to add on her plate,
    now that her husband Eric has ALS.
    This is SO not fair!
    I cannot fathom how she does it.
    Judi has had to quit a job she loved for ten years to stay home and be a full time caregiver to both her son and husband now.
    Is she even MORE exhausted, sad, frustrated, worried & scared?
    Of course.
    But most the time, she continues to be upbeat and determined to take care of the two men she loves most in this world ~ to the very best of her ability.

    So it comes to me then, like a bolt of lightening, I am flying with my x-ray vision.
    I have decided I want Judi’s superpower-

    The power to love unconditionally.

    #8462

    Manya
    Member

    LOVE LANGUAGE

    My brother in law Eric has ALS.
    Now – I’ve put this in writing.
    Much as I hate it, there it is.
    Everyone in our family is trying to wrap our heads around it.
    Acceptance with something so shattering is hard.
    Beyond words, beyond anything.
    Eric is only 47, how can this be happening?

    The men in my husbands’ family are Norwegian- generally quiet, friendly, un-showy people.
    Except my brother in law Eric.
    Eric has always been strong spirited and opinionated.
    The center of attention.
    Never afraid to show his feelings or speak out.
    Brett and his father Bob, are more alike in the way they operate- a kind of fly under the radar approach.
    Never very demonstrative, or loud.
    Simple and kind.
    Understated.

    The three Vartdal men have been close as any father, son, brother trio can be.
    Eric, usually in the spot light, Brett & Bob completing the triangle.
    All equal sides complimenting one another, holding each other up.
    Now that ALS has started to really effect Eric, I am humbled at the way these men show they care.
    Their love language is not talking so much, as doing, being there, and lending a hand.
    Constant, steady, quiet.
    For example:
    In the years I have been with my husband Brett, I’ve heard the story of his mango poisoning many times.
    He is extremely allergic to the sap of a mango tree.
    He learned this only after doing quite an impression of the Elephant Man.
    It was awful!
    So afraid of suffering again, Brett has been paranoid of mangoes.
    Just having them in our house makes him nervous.
    It’s a major operation when I actually get a mango, and Brett prefers I eat them when he is not even around.
    I have to promise to be very, VERY careful and clean up every last bit before he comes home.

    Ironically, one of Eric’s passions has always been growing fruit.
    Mangoes, of course, are his favorite.
    The mangoes from Eric’s trees are a slice of heaven here on earth. I tell you- they are creamy and sweet.
    Simply amazing.
    So worth the effort & clean up!

    Now that Eric cannot do it himself, and it’s prime season-
    Brett goes over almost daily, and picks mangoes for his brother.
    (with bags on his hands)
    He even brought some home for me to eat.

    Love language.

    Bob, Eric and Brett used to fish & golf together, they have had to make adjustments.
    Now they watch fishing and golf together, on TV.
    Weekly, and as much as they can.
    Time is precious.

    Tonight as the three left our house, I looked out the window and saw how, without a word, Bob walked ahead of Eric, checking to be sure his footing was solid. Brett walked behind, a hand out hovering near his back, to catch him should he fall.
    And I am humbled again at the power of quiet love.
    If you are a Vartdal, you certainly don’t have to scream to be heard.
    Their love language is loud and clear.

    #8464

    GEBrodie
    Member

    My ALS Hero is my husband who has had ALS for thirteen years. Although he has many limitations; his spirit is not weakened but has been made strong. The following is an excerpt from his website; deathvalleypromises.org where he shares his hope with others.

    A Hug of Reassurance
    by Scott Brodie

    Have you ever come to the place where you set your heart to seek God? You say “I want to go deeper and further in the Lord” “I don’t want to be lukewarm anymore” God begins to answer your prayers and move in your life. Suddenly in the midst of it you find yourself spiritually dry in a wilderness or desert place. Your thoughts are full of more questions “Why am I here?”, “Does anyone really care?” “Is God displeased with me?” “Is my life used by God to be a blessing to anyone to make a difference?”

    These types of questions usually come when we feel alone in the wilderness. The things we had hoped for or expected seem empty. We begin to evaluate our lives and ask how we have failed God. I have also been contending with some of these nagging questions “Where is God in this time of trouble?” My body and mind have been fatigued from repeated emergency room trips, hospital/nursing home stays, supportive equipment, supplies, medications, appointments, therapies and procedures. Notwithstanding the persistent humiliation of a life of dependence with an inability to give back. My mind continually fights a barrage of accusations urging me to give in. To quit trying to survive this recluse life, tube fed on formula with rounds of lung infections that compromise my ability to breathe. My physical body alone is seemingly powerless to survive several near death experiences. Truly, it has been the spirit that has sustained me on my bed of affliction.

    “The spirit of a man will sustain him in sickness, but who can bear a broken spirit?” Proverbs 18:14

    …….God wants us all to know and be assured that His everlasting love will never leave us; we are the object of His love. The confidence of love is where we must begin to face any trial placing our trust on the rock of our salvation, Jesus. He has paid the penalty for sin, we can come to His throne of grace to find help in the time of need (Heb 4:16)….Oh yes, we have many needs! “Many are the afflictions of the righteous but the Lord delivers him out of them all” (Ps 34:19). Through His faith impartation, we can rise above our trial and be at rest in the midst of our storm. He will give us His grace and mercy to overcome. God will strengthen us for the battles we are in, showing us the way to victory. As we cry out to Him we magnify His Name above any situation. David said in Psalm 40:16 “Let all those who seek You rejoice and be glad in You; Let such as love Your salvation say continually, The LORD be magnified!” Each time we depend on our Savior to help us; we exalt His Lordship in the earth. Paul said in Philippians 1:20 “according to my earnest expectation and hope that in nothing I shall be ashamed, but with all boldness, as always, so now also Christ will be magnified in my body, whether by life or by death”.

    The wilderness experience is an impossible place for our fleshly nature because this is where we must die to the way of natural thinking. Only our spirit man can survive in such a harsh desert place being tested and humbled by the devil. God loves us unconditionally and uses the wilderness to strengthen and perfect us, causing us to depend on Him. Desert places are dry paths that lead us to new revelations and victory in Christ. These dry paths lead us through the Jordan River into the Promised Land. Jesus, our example, was led by the Holy Spirit into the wilderness to be tested by the devil (Luke 4:1-2). When he returned, he revealed Himself full of the power of the Holy Spirit (vs.14).

    #224161

    Avesjager
    Participant

    Im trying to track down some great fan fiction that was very popular around here when X:TC was released. It was a guy who wrote about some comical and dramatic space adventures of dying poorly in space. If anyone remembers who this was It was, at the time, the most commented series of posts on the site IIRC let me know. Id like to try my hand at it for the new series. Thanks

    Edit: I just searched all my posts and couldnt find it , however I do think I narrowed the time down to between X2 and X3 when he was writing most often. Anyone like Nanook around that might remember would be great. Its such a great thing that the forum posts go back that far

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