Friend of Faith

[RaineLee]

Hi there. I'm new to this forum.
I have a dear friend that's been his diagnosed with juvenile ALS. I love this friend very much and he and I have been close for many years, he was a big part of my high school years. He has been a devoted Christian as long as I have known him. He suffered from alcohol addiction for a while but he began to recuperate in our last year of high school and he became a really great friend in that time as well. He had band that he was so invested in but he had to leave because his knees eventually began to cause him pain onstage, until he couldn't play guitar, and then he couldn't play piano. He was in school and quit that as well, as university is hard to navigate when you struggle with standing and walking, and his dignity is everything to him as well. He truly in his heart believes he will get better.
I am not a religious person and struggle with the idea of my own mortality. He really holds on to this hope but I see him deteriorate more every time I see him. I am so happy he has his religion and this beautiful conviction that miracles exist. I would never try to tell him otherwise because this belief is what keeps him goIng. But I feel so sad. I do not believe he will get better, and it scares me how quickly he's getting worse. I don't know how to cope with my grief, I truly believed he'd grow up to do so many great things and be famous and have all this recognition. And now my belief in dreams is shattered. Life is so unfair and can be so unforgiving, taking breath out of those that do not deserve to go.
So I guess my questions are, how do cope with this situation? How do I support my friend in the best way possible without showing him how sad I am?

Thank you all.

 

[Dave K]

You sound like a very caring friend. That is more important than anything else--just to care and to be there for your friend. Also, we hear many PALS say that they don't want to be treated with pity, but to be treated just like an able-bodied person. I'm not religious, but I have seen "miracles" happen, in that doctors can be totally wrong about what the future holds for a PALS. There are even rare cases where time has proven that a confirmed ALS diagnosis was wrong. That said, one must always hope for the best and plan for the worst. In even the most severe cases, quality of life can be achieved with the proper care and support. You've come to the right place to find info on how to provide that care and support. Whether you're a Christian who believes life is God's greatest gift or an atheist who believes we have just one life to live, the key is to just try to make the best of it, and friends are a big part of that. Wishing you and your friend can make the best of a tough situation.

 

[KimT]

You're a good friend. Please tell your friend he is in my daily prayers. He is blessed to have you!

 

[Atsugi]

Great question. You've got the best intentions and a tough task ahead.

Most people run away from People who have ALS (PALS). We really learn how fickle our "friends" can be. Even relatives suddenly don't have the time for us when they learn of the terminal diagnosis.

You'll help more than most simply by being there. Let him talk, even with the delusion of being cured. Just nod and be polite.

Yes, life is not fair. Dreams are shattered or forgotten often. Death is part of life. In my view, optimists are delusional because it's the only way normal people can get through life--by lying to themselves. But it's a necessary lie.

You can show that you are sad, but don't lead with it and don't drag it out. Just be there and help out when needed.

My consistent advice for half a decade now is that PALS get whatever they want, even if you disagree; even if it's bad for them--even if it kills them. I believe we must treat PALS like the independent adults they are, and we should support their decisions fully. If he wants to have faith in a cure, so be it.

Good luck.

 

[swalker]

I am a PALS and am a christian. My wife (who is my CALS) is not. So, I can relate a bit.

My faith makes this easier for me to bear in many ways. I believe that God is sovereign and therefore accept whatever my future is. Because of that, I find it easier to remain cheerful when the going is tough. I hold out hope for a miraculous cure or a visit to the doctor where they say "oops, we were wrong". But, if that does not happen, I accept the outcome with an unwavering faith in God and Christ.

I accept that others do not believe as I do. I suspect he does too.

It is obvious you are already supporting your friend. Continue to do so. He will have good and bad days (emotionally and physically). Be there for him. Accept that he is the only one that can make the decisions in his life.

It is good to acknowledge that his illness brings you great sadness, but don't dwell on it. Be real, but allow him to live his life as fully as he can, even when you see how limited that may be.

And, I encourage you to continue to participate in this wonderful forum. It has been an amazing source of care, compassion, information, and inspiration for me. I suspect you will find the same.

Steve

 

[Buckhorn]

Welcome RaineLee. You will receive good advice here from many people who know what they are talking about. You are a good friend - and just being there for your friend will be very meaningful for him. Give him space, but also, do not abandon him when the going gets rough (I doubt that you will, but when you think you can't do anything you really are - just by being there!). Thank you for caring so much about your friend!

 

[Dave K]

optimists are delusional because it's the only way normal people can get through life--by lying to themselves

. . . . Huh?

 

[chally]

Your a true friend sister and he is fortunate to have ya.
Just being there is good. It will get rough! Take breaks are there others that might be on the " Friends team ' ?
Don't forget to take care of yourself, " burnout" comes on quick. Be strong!
Love ya chally