I’ve found out someone I love has Lou Gehrig’s Disease. What do I do?

I remember that first day.

I was at a friend’s house, waiting for news.  Our pastor came over to tell us the news.  He’d been with my mom and dad at the doctor’s office.

I had been told my dad probably had either a brain tumor or Lou Gehrig’s Disease.  And that I should hope it was a brain tumor.

I guess I had thought it was a brain tumor, because when I found out it was Lou Gehrig’s Disease, I felt insane.  You hear the term “hit with a ton of bricks”.  This was like getting hit with a ton of bricks–but I didn’t feel the bruises until the next day.

The next day was Christmas Eve.

My father was sobbing.  The whole day, I remember him sobbing.  My mom cried.  And I just wanted to go away somewhere where I would never have to deal with this.

I can’t remember how much time went by before I looked Lou Gehrig’s Disease up on the internet, but it wasn’t very long.  Looking it up, reading about it, I felt like I was learning something as crazy as that elves and flying horses were real, only, there was nothing magical about this.

If I could go back, and place myself in that moment again, what would I have liked to know?  Here are a few things I learned, and, while I can’t promise that it will all be helpful or even relevant to you, if someone you have loved has been diagnosed with Lou Gehrig’s Disease, my prayer is that something in this will help you.

Shock

Please remember that you are in shock.  Your body is in shock, your mind is in shock, your soul is in shock.  This is not a time to be rough with yourself.  You’re in shock, and you need time.  It won’t feel like there is time right now.  But give yourself time to just “shock”.

Darkness

Disease is darkness.  There is a loneliness, a desolation, and a great feeling of abandonment in disease.  You’ll feel like you personally have been cursed, for someone you love so much to be going through this.  You’ll see the ugly underbelly of disease that is rarely portrayed in movies.

You’ll feel as though a rug has been yanked out from underneath you, and a bottomless pit is underneath.  It might sound awfully pessimistic and depressing to say that disease is darkness, but denying it only seems to escalate the twilight.

Almost nobody

Almost nobody knows what to say.  Friends and family will try their best to take a stab at helping your grief, and that is usually just what it will feel like: a stab.  You will probably want to hate some of your good friends–maybe even all of them–and maybe fist in bitterness towards your family.  You will probably want to drive people away because most of them are so unhelpful.

Unwelcome reality

You will probably find out you have a lot fewer friends than you thought.

Too much research too soon

You will want to research Lou Gehrig’s Disease and people who have had it, and that won’t probably be a good idea right now.  Shock is really like an electrical voltage.  Be kind to yourself and don’t amp it up any more by reading things on the internet that may or may not be true and by learning about late stages of the illness.  You’re not there yet.

Do I have it, too?

You may start experiencing physical symptoms yourself, even symptoms that resemble Lou Gehrig’s Disease.  This isn’t an unknown phenomena.  Get yourself checked out, and then let yourself rest, at least for a while, if doctors can’t find anything “wrong”.  Stress is really hard on your body.

Trying to be a hospital

Please don’t try to do everything at once.  You probably want to “fix” this, and that’s part of loving someone, but you can’t be your own hospital.

You don’t need to research every possible help for Lou Gehrig’s Disease in the first 5 hours after you find out the diagnosis.  For one thing, there are all kinds of cruel, cruel people out there who have never lost someone they love from an illness or just don’t care and they exploit people who are desperate and looking.

To find out about research, immediately join a support group at your local medical facility or through the ALS Association, but please, please don’t get sucked into the misinformation and lies that just worm their way out of the woodwork when you’re looking for cures.

The curse of false cures

There will be people, maybe even people you love and trust, who will suggest things to you that could be cures or remedies.  You will want to believe in all that desperately because who wants to have despair?

There is a way out of despair without being baited into cons.  Pray.  I’m not being politically correct here, I’m being real, with what has changed my life.  God, who loves you and never wanted there to be suffering in the world, does not promise us that He will fix everything in our broken world right now, but He does prove to us He cares through the cross He suffered.

The Bible tells us that Jesus hurt as no one has ever hurt before, and no one will ever hurt again.  Isaiah 53 prophesies what it would be like for Jesus to take away our sins: “Surely he took up our pain and bore our suffering” (Isaiah 53:4a, NIV).

If friends ask you to help, take them up on it.  Real friends will want to help in real ways.  Maybe that’s helping you clean the house one night.  Maybe that’s giving you a gift certificate to a spa.  Maybe that’s bringing over a meal once a month.  Letting people help you actually lets them know that you trust them and that they are important to you . . . and it helps them deal with their grief, too.

“I need a break.”

Give yourself permission to take breaks.  If you are in a caregiving role, you will be more worn out than you have probably ever been in your life.  In addition to the grief, anger, frustration, and terror you feel right now, you are taking care of someone you dearly love in ways you have never had to take care of them before.

If you have friends or family who can give you a break, please let them.  We are sometimes afraid we would be selfish to take time away, because we forget that God is the only one who can take care of people 24/7 without burning out or ending up feeling bitterness or hatred towards them.  It’s okay to take time away.

Go to a quiet sanctuary or a crowded restaurant or run a few errands–you need the rest.  When you are gone and you have feeling of guilt, pray for the person you love and pray for relief from your guilt.

Blame

You might start feeling anger, hostility, or bitterness towards the person who has Lou Gehrig’s Disease.  You’ll feel like a horrible person, but you’ll probably still have a fury inside you that you can’t seem to unwind.  Give that grudge to God.  Tell Him you’re mad at Him–because He is who you’re really mad at.

God can handle it and that way you won’t be hurting the person who is dying, who needs your love more than ever.  Give the anger to God and ask Him to show you how you can ever let go of the grudge you hold against Him.  I am convinced, I am sure, that if you seek help from the Helper, you’ll find it.

Healing

Pray for healing.  Let God know what you want.  Of course you want healing.  This is something I was very stupid about.  I would pray over and over again, quietly, pleadingly for healing.

I didn’t just tell God, “God, I want you to heal my dad!  And why wouldn’t You?????” I regret not doing that, because it would have been honest, and God wants us to come to Him with an honest heart.  But I don’t mean I wish I had done that so my father could have been healed.

I do not, absolutely not, absolutely-absolutely-not believe God took my father away from me because of a malfunction in my prayer.  1 John 4:16b tells us, God is love.  Is God going to catch us in a prayer malefaction so He can refuse to heal?  Absolutely not.

Jesus tells us that God knows what we want before we ask Him.  I’m learning to come to peace with the fact that God sometimes wants what I want . . . and sometimes He doesn’t.

I’m learning to come to peace with that because I believe, from the bottom of my heart, that God works through all suffering and catastrophe in the world so that as many people who can may know Him.

It’s a mysterious will, but God is a mysterious God (Romans 11:33).  And this same mysterious God used the great mystery of His love to send His Son to die on a cross for us, when we didn’t deserve it (see Colossians 2:2-3).

Therapy?

I will be real honest here.  I did not ever find any long-term or sustaining help in therapy.  There is something to be said for being able to vent and share with someone.  I think there are probably really good therapists who really can help.   But the therapist I got was unsympathetic that I had missed my first appointment because my father had died.  Not helpful.

So my story is (I hope) an anomaly.  But I would say this: please go to a therapist of a trusted friend who has truly gone to that therapist.  Going on the recommendations of people you hardly know or just setting up an appointment . . really isn’t sublime in my book.

If you don’t have any friends who can give you advice, I would recommend visiting therapists without committing right away.  Visiting a few will probably help you match your personality to theirs.  The trouble is, that’s expensive.

Still, I wish the therapist I had would have thought I was “just visiting”.  He might have been nicer and I wouldn’t have felt so upset when I knew he wasn’t going to be able to help me.

I did get help from talking to pastors.  There were two pastors in my area I saw, one who was a full-time counselor and the other who was a full-time pastor who counseled in “spare hours”.  They were both free.

My thinking on free counseling is that someone is for sure not trying to take your money.  Free counselors aren’t necessarily qualified, though.  What I learned the hard way: go with counselors who people you know and trust have truly gone to and received help from.

Little good times

You may get so busy with worry, fear, and caregiving that you forget to look for the little good times.  Love the little good times.  One of my big regrets is that I usually didn’t.  I got so caught up in despair that I forgot I was in the last moments I would ever have with my father on earth.  Maybe that’s denial, too.

What I know is that I lost sweet times because I would go off to “cope” by playing video games or staring at my computer screen or watching TV.  This was not coping, but it did steal little good times from my life that I can never get back.

Love

You can become bitter and spiral down, down, down.  Your mind, body, strength, and soul may be attacked by whirlwinds of anger and strangled by grips of grudges.  Now, no one I know wants to become this.  No one wants to be someone chained down and caged in by anger and bitterness.  But anger and bitterness rarely starts out as giant monsters.  If they did, people would be afraid and run away.

Instead, they start out as friends.  They offer to walk with us while we’re feeling so bad, talk with us, give us advice.  In essence, they offer to be our god.  As time goes by, they demand more and more of our time, until they consume us and command us to do and say things we would never do and say otherwise.  They take over.

They scare us into submission because we’re afraid that, if we let them go, we will hurt so bad we won’t be able to stand it.  The truth is, letting go of anger and bitterness can hurt.  They are old friends, and parting ways will never be peaceful.  They will pursue every avenue they can to get back into your life.

Letting go of anger and bitterness is scary, because we’re afraid to face our grief alone.  With anger and bitterness at our side, we feel at least we have some companion to go through this with us.  But, without them, we don’t know what we’ll face.

I had a friend tell me one time that, on an emotions’ scale, anger is a “better feeling” than despair or depression, and that is so true.  We don’t want to let go of anger and bitterness because we’ll fall further down the emotional scale.

One of the most extraordinary characteristics of Christ was that He was willing to fall.  Rather than grasp for anger or grudges or bitterness along the way, in His suffering on the cross, He held Himself back from holding onto even any rights He had as God, except for the right to be our perfect sacrifice (see Philippians 2:6-11).

When I think about how Jesus has gone into the darkest depth for me, I am not as afraid to explore grief without anger and bitterness.  But this is something I didn’t learn for many years after my father had died.  And what I found was that anger and bitterness won’t settle for being anything less than your best friends.  They take over, and they chase away friends you wish you had instead, like hope and joy.

So in dealing with any long-term illness, the best advice I can give, the most important thing I learned, is that you are either drawn to the very heart of God to press your head against His chest and listen to His heartbeat . . . or like me, you are driven to go further and further away from His love into the cold, bitter, desolate territories of the human heart.

But one last thought.  If you do go down that path, there is still a way back: God’s love.  I was way, way out on a desolate glacier where there’s nearly always a blizzard . . when I heard God’s heartbeat . . for the very first time.

He’d found me.

Crumpled . . Free

I’ve heard stories and legends of people folding pieces of paper and turning them into alive and wonderful creatures.  Origami is kinda that way.  What looks like a paper hopelessly creased and bent becomes a breathtaking marvel of art.

I believe God is able to take our lives, as crumpled as they may be by the sin and suffering of this world, and turn us into masterpieces only He could design.

As much as Satan wants us to live our lives groveling to him for anger and bitterness so we can get a “fix” for our grief, he has no control (or ability to understand) how God can (or would) take crumpled lives and metamorphosize them into lives of purpose, beauty, and freedom.

My father will have been gone for 8 years this September.  Watching him deteriorate with Lou Gehrig’s Disease was one of the hardest journeys I’ve been on in my life.  It wasn’t one I handled well.  Truth be told, I bitterly, bitterly failed.  I hope that those who have friends or family with Lou Gehrig’s Disease will be able to avoid mistakes I have made, and maybe find hope and direction as they cope with this desperately hard news.

With all the failures of who I was during my father’s illness, I should rightfully live the rest of my life in mourning.  But I don’t, not usually, because I have heard the heartbeat of God.  He can unfold even the most ugly paper wads and fold them into creatures totally set free from sin.

And even the illness and caregiving experiences of Lou Gehrig’s Disease can be refolded into something more beautiful than anyone but God can imagine.

“No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love him.” (1 Corinthians 2:9, NLT)

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