New member with new perspective on ALS/MND

[Michael FM]

I registered with the Forum yesterday and I'm saddened by all the anger and suffering going on in people with ALS. I feel for those who see themselves as trapped in their quickly decaying bodies and feel victimized by their situation. This must be a very Hellish place to be living in.

I found out I had ALS two years ago and I have embraced my situation as a blessing to me. I believe we've come to earth to learn and grow spiritually. Everything that comes to us is a part of our lesson plan. Having ALS is a major course for us.

However, if we don't see life as a gift to help us evolve and instead, see life as a passing opportunity to just have fun, then having ALS will surely be Hell.

Making the shift from the perspective that life is here to enjoy to the perspective that life is here to teach us, is available to all of us and can transform Hell into a place of peace, reverence, and love.

To me, ALS is an alarm for me to wake up spiritually and I am blessed to have had this alarm go off in me. My life has turned upside down and also I recognised resources for waking up made themselves available to me in the forms of books, people, workshops, breakdowns, and so on. It's as though my embracing ALS sent out a request to the universe to teach me what I need to learn and the universe responded big time!

You would not believe the growth I have experienced spiritually. I now have no fear of death, in fact, I'm looking forward to it! I live my days with a much deeper awareness of myself in the spiritual universe which is my loving home.

I will contribute to my beloved partners with ALS. Loving you is a large part of my growing. I DO love you.

Michael FM

[Al]

As I said in a recent posting I am happy that you have found the way. I am not sure if it would work for all of us and would hope that you are not a religous zealot that has come here to provoke fear and dismay among our fellow sufferers or lucky people as you infer in your posts. We all deal with illness and religion in our own way so I would suggest that it is good for you to feel lucky to have ALS but as we used to say in the flying business Don't push the envelope.

[Michael FM]

Thank you, Al, for your response. I'm sure many people share your concern about me being a religious zealot. I'm happy to say, No, I'm not here to provoke fear and dismay as if we should fear the wrath of God. No way. I want to share my perspective because it offers a place to stand in which one sees oneself within a spiritual universe that is here for the evolvement of humans collectively. There is a vast body of knowledge available to us that describes this spiritual universe and it is called Anthroposophy or spiritual science. Studying this knowledge provides a huge detailed picture of humans' spiritual evolvement. After studying it for a while and in conjunction with an event I won't go into now, I found myself within the huge spiritual picture. I no longer see myself as just another person trying to get by in life in which I seek pleasures and avoid hardships. I'm here to grow spiritually which I'm sure sounds weird to many people but from the perspective of spiritual science, it fills my life with a purpose that transcends my selfish needs and fears. I cannot explain this purpose simply so I won't go there now.
I have much compassion for the fear and suffering in people with ALS and yes, we all have our own ways of dealing with our situations. I am offering to those who are intersted, this body of knowledge which I believe greatly broadens one's perspective to where life takes on new meaning and so does having ALS which for some will become regarded as a gift to further spiritual growth.
It is important for me to say that the suffering experienced from ALS serves in one's spiritual evolvement in that it builds spiritual strength for one's next life. Yes. Spiritual science includes knowledge about reincarnation.
It is difficult to describe spiritual science with so few words. Believe me, there are many more words available for those who are interested.
Bye for now, Michael FM

[Al]

As I said earlier we all deal with life in different ways. The good thing about living in North America is we still have the right to our opinons as long as we don't get silly about it. I don't mean just you but the population in general terms. If we get too goofy the men in white coats come to get us.Are they protecting us or themselves.? That can be a whole new topic in itself but it's after 3 here so I'm off to bed. Good night. Take care.

[Michael FM]

What is the point of your post? Do you think I am silly or too goofy? Please clarify.

[Al]

Geez I knew you'd take that the wrong way. If you could go back and read sentence 3 of my post. I was speaking in general terms and am sorry you thought I was singling you out. It wasn't intended. But that said I will again ask you to look at your post. In it you say that many people find your ideas weird. I didn't say that you did. What I said also was that we have free speech unless we start getting goofy. I didn't say anyone was but we have had a few here. I hope this clarifies my position.

[hope]

I hope it is okay to say this but I am sorry I am angry and I am upset and frightened and any other word that goes with pain and grief I own them all. This disease hurts and it hurts deeply. I respect your view and your feelings but if you do not mind I really feel that in know way shape or form this illness has any positive sides to it at all. Every day I hold my loved one close to me and I cry with him I laugh with him and I get frightened with him. We have been together many years and it is breaking my heart every moment of the day to be going through this with someone I love with all my heart and soul. He is my best friend. Every time he hurts I hurt deeply. I see nothing and I mean nothing positive about being this. We have always been very close and we did not need an illness to become closer. I wake up crying and I go to bed crying. Every day a piece of my heart feels like it is being pulled away from me. Please forgive me if you think I am rude or disrespectful here I do not mean to be but I have to be honest your post truly hurts to read.

Sandy.

[Al]

Sandy as I said to Michael we can say whatever we need to say here within reason. No one looks down on anyone here or at least I don't think they do. Your post was very heartfelt and I am sure most of us agree with you. This isn't fun and if 99.9% say it ain't fun I'm gonna go with the flow. It's not fun and while I respect Michael's opinion there is no way he would ever convince me that this is a blessing. In less politically correct times we would have said that's nuts. Each to his own way with coping. It's like the guys who come to your door preaching their brand of religion. Sorry no thanks not interested. Closed minded? Maybe. But I still have control of My mind.

[Michael FM]

Hi Al, Thanks for explaining what you meant. I found that I was rather sensitve because I was a new member and I was sticking my neck way out by describing my unusual spiritual foundation. I was hoping to hear from others with similar orientations and that some people would hear a ring of truth in it and request to hear more about it.
Bye for now, Michael

[Michael FM]

Dear Sandy,
Thank you for being so honest with me. Your words touched me deeply and I feel for you and your beloved partner. I honor the very hurtful feelings you and he are experiencing. I am sorry that my post was written in such a way that it caused you more hurting. Believe me, I'm learning a lot the hard way about communicating effectively. Your honesty has been very helpful in waking me up to the inner life of those who are suffering horribly from this dreaded disease. I feel much compassion for you and your partner. Love, Michael FM

[CIARA1]

I just read that post. thats not a very good post in my eyes i am not waiting for death i am fighting it. and all that love how can you love me? (or Al for that matter hes planning a take over. lol lol)



best wishes kim

[Al]

Glad everyone understands each others points and it looks like we'll all have a better day for it.

[hope]

Michael,

It was kind of you to respond to my post but it is okay. In my post I did say to you that I respect your feelings and your opinion, it is okay. We all have our own feelings and views on what we are living in. There is no need for you to apologize to me. I was just expressing how hearing the words you posted hurt, it is not your fault that it hurts it is how I feel. If this is how you are coping with ALS then that is your way and if this helps you then that is what is important. We all find our own ways in dealing with what we are in. I just wanted to say that for me I feel differently. It is horrible for us. Our son cries every day and not only does it break our hearts but watching your child feel this pain is truly heartbreaking. When you are a parent you never want your child to feel pain. When they are little and they scrape their knee you put a bandage on it and give them a hug letting them know it is okay. This pain you cannot put a bandage on it. The hugs are there yes but even the hugs will not take away the pain.

Michael I know what we are all in is devastating. I know you see this in a different way. I am sorry, for me there is nothing in this whole world worse than what we are now living. My heart goes out to everyone here. Everyone here is kind and caring and we try to help each other cope. I am happy for you that you have been able to accept what you are in. I personally will never be able to do that. I would be lying if I said I could.

Every day we laugh as hard as we cry. We do our best to keep a smile and a positive attitude. Sadly though the mountain is a very high one to climb, but I will climb that mountain and I will probably fall down on that mountain but I will take care of my loved one. My heart I admit is breaking every moment of the day but I will make our life as wonderful as I can make it.

In life we all cope in different ways, your way does not mean it is the wrong way, it just means it is not my way and that is okay. My heart goes out to you too, I am sorry you have this illness.

Sandy.

[MarciaA]

Sandy,
My heart, too, breaks more and more every day when I think about what ALS is doing to my sister and her friends and family. ALS is such a horrible illness...so unfair with no way to really fight it.

Michael,
It's great if the thought of an afterlife puts you at peace and if your faith is strong. I can not imagine looking forward to death...that's just not where I'm at right now in my journey...it's not in my comfort level.

Marcia

[spud01]

Michael FM

I am glad this is working for you. But, your posts only makes me feel so much worst. I feel so much weaker now that I don't have the strength to cope so well.

Spud (Terri)

[hope]

Marcia, I know how you feel and my heart goes out to you. My husband is a wonderful man and it is truly heartbreaking to be in this. I feel helpless at times. Sometimes I do not know what to say. My husband says honey you do not need to say anything, loving me all these years and taking wonderful care of me says it all. This is painful Marcia but please know we are here for you. Your sister is lucky to have you.

Sandy.

[rcharlton]

This is a bit of a double post - but I thought it was appropriate...

I'm not a spiritual person - and I cope just fine without thinking that this life is just some practice run for a big reward in the afterlife. It is my personal belief that my only after life will consist of my being worm food.

Do I get scared sometimes? You bet! Do I cry? uh huh...but I spend more time laughing...

I would not go so far to say that ALS is a gift...but since my dx I've realized how many things I use to take for granted. Everything now has more meaning - it's like all of my emotions have been heightened (that could just be the ALS talking). In a lot of ways I've never been happier or felt more alive.

That numbness that so many people experience as a result of the dreariness and lack of purpose in their day to day lives has vanished for me. I now know that everyday is a gift and I already have so much to be thankful for in my life. Is it better to live a long life feeling half dead all the time or to live a shortened life feeling totally alive? I don't know...

I also imagine how I would feel if, after stressing about ALS and letting it consume my every thought, I lay in a hospital bed dying...not from ALS but from getting hit by a bus or infected with bird flu. I would feel pretty stupid having wasted all that time stressing about ALS only to die from something else unrelated.

You may not have a choice about ALS - but I firmly believe you have a choice about being happy or depressed...and I choose to be happy!

So do whatever it takes to make you feel happy - reading an Archie comic, wearing a goofy hat, digging up your old teddy bear from childhood, going out to smell spring blossoms, calling an old friend to laugh and cry - and if you think it may help - by all means get in touch with your spiritual side....

As long as something does not involve a significant outlay of money or cramming your opinions down someone else's throat - and it makes you happy - I say go for it...

Good luck everyone.

Richard

[hope]

Richard,

Your post was very well written, I enjoyed reading it. Thank you.

Sandy.

[Michael FM]

Hello Terri,

I just want to say that what is working for me is not my strength or my beliefs or my faith in some religious concept. What allows me to feel at home where I am in life and near death is my understading of the big picture as painted by spiritual science. Rudolf Steiner, the main contributor, was a very advanced human being and he was clairvoyant. He didn't make this stuff up. He wrote over thirty books and gave over six thousand lectures which were turned into many more books. It takes a lot of studying to get a sense of the big picture and it's best to study with in a group that includes people who can answer the many questions that come up for newcomers. For me, seeing the overview of human evolvement is not only extremely fascinating, it also enlightened me to the purpose of my being here and pointed to how I can best proceed with my journey. Again, this is not an issue of strength or belief, it is about understanding and choosing.
The universe is here for our growth and to understand the details of this is very uplifting.
By the way, my symptoms are such that I can still walk and totally take care of myself. So I have a lot of failing of health yet to experience. I'm sure this will cause much anxiety for me as I loose my freedom. I'm aware that my suffering will act within me to develop spiritual strength for my future lives. The suffering we experience serves us greatly. My understanding is that we're each on a long journey and this life is one step of many. Those of us with ALS are taking a large stride. It WILL pay off for us. Lastly, we receive spiritual help especially if we ask for it.

Take care my friend,
Michael FM

[Barbie4]

Hi Richard;

I wanted to say that your post was great to read and I enjoyed it too. My friend and I sat outside today and enjoyed the moment. We listened to all the birds singing, felt the sun and just relaxed and forgot about ALS for a bit.

Thanks Barb:-D

[marlo]

Hello Michael,

Welcome to the forum. I too have no problem with death.,, i mean i'm not looking forward to getting from here to the after life but i know that ,,,is really my home. This one is only temperary. I'm not sure that blessing is the right word exactly, but i do understand what you mean. I am very careful not to shove my religion down other peoples throats that are not interested,, but i do know there are others on this forum that walk with the Lord too. Just because i don't have a problem with death doesn't mean i don't have thoughts of missing my children and my first and only grandchild. But for those of us that do believe in Heaven,, it means peace, love, and no more tears and pain. And once we're gone, we won't remember earth as we know it now. And i am looking forward to seeing the other members of my family that have already gone,, ahead,, like the child i lost,, and my wonderful grandmother. Also both of my parents etc. even my husband and a lost love of years ago. I pray for all of the people everywhere not just on this forum that are dealing with terrible things like Cancers , MS, MD, ALS/PLS etc. that they find the strength to take it one day at a time and know that it will be alright,, here or in Heaven.
I won't bore everyone with my story about why i have ALS,, but i do believe it had something to do with some prayers i was having with the Lord just prior to getting sick. Becareful what you pray for or about cause God answers in his way not ours. But on a brighter note,, those same prayers brought me a grandchild that the doctors had told my daughter she would not beable to have. So is it my life for the life of a child for my daughter ? Who knows for sure,, but i'm not complaining.
Take care,, and again welcome to the forum.

Love and Prayers
Marlo

[marlo]

This is a bit of a double post - but I thought it was appropriate...

I'm not a spiritual person - and I cope just fine without thinking that this life is just some practice run for a big reward in the afterlife. It is my personal belief that my only after life will consist of my being worm food.

Do I get scared sometimes? You bet! Do I cry? uh huh...but I spend more time laughing...

I would not go so far to say that ALS is a gift...but since my dx I've realized how many things I use to take for granted. Everything now has more meaning - it's like all of my emotions have been heightened (that could just be the ALS talking). In a lot of ways I've never been happier or felt more alive.

That numbness that so many people experience as a result of the dreariness and lack of purpose in their day to day lives has vanished for me. I now know that everyday is a gift and I already have so much to be thankful for in my life. Is it better to live a long life feeling half dead all the time or to live a shortened life feeling totally alive? I don't know...

I also imagine how I would feel if, after stressing about ALS and letting it consume my every thought, I lay in a hospital bed dying...not from ALS but from getting hit by a bus or infected with bird flu. I would feel pretty stupid having wasted all that time stressing about ALS only to die from something else unrelated.

You may not have a choice about ALS - but I firmly believe you have a choice about being happy or depressed...and I choose to be happy!

So do whatever it takes to make you feel happy - reading an Archie comic, wearing a goofy hat, digging up your old teddy bear from childhood, going out to smell spring blossoms, calling an old friend to laugh and cry - and if you think it may help - by all means get in touch with your spiritual side....

As long as something does not involve a significant outlay of money or cramming your opinions down someone else's throat - and it makes you happy - I say go for it...

Good luck everyone.

Richard

Richard,

Wow,, except for the worm food,, LOL i couldn't have said it better myself. Enjoy the little things in life everyday. Smile more, cry less. Be thankful for what you have,, instead of dwelling on what you don't have. I do have a home in heaven,, i'm sorry you don't think you do. I will pray about that,, if ya don't mind.

Love and Prayers
Marlo

[spud01]

Richard,

I loved your post, Thank you

Terri

[ichortle]

Michael,

I like your attitude towards the disease. I see life as what it is doing for me instead of what it is doing to me. Having ALS sucks in many ways, but it has strengthened the bonds of love between myself and my family and friends. I am grateful to be surrounded by so much love.

Steve