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Filmmaker

Active member
Joined
Nov 24, 2011
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76
Reason
PALS
Country
CA
State
Québec
City
Montreal
Hi everyody

This is the first time i post a personal thread on this forum.
My symptoms started almost three years ago, I was then 28 years old leading a very active life, which i was quite happy with, as a nomal young woman. first came headaches, weird kind of headaches, later i came understnad they actually were hemifacial spasms... ut hey I had never experienced such a thing so i didn't even know how to descrie them to doctors...
I was then living in Montreal, symptoms then moved to my back with burning sensations, but still docs coulnd't find anything wrong... I then came back to morocco to stay with my parents, with still no diagnosis ut I knew something deadly was going on in my body. As i was still to move ok, this was all put as psych thing, then as firomyalgia. despite me insistig that something more was going on, as all my medical exams were always fine, i was dismissed as being crazy. After maye 25 or more doctors, even my parent started being convinced that this was all in y head and that i needed to get out from my so called deep depression. So i just gave up and stayed home all this time, my symptoms kept getting worse and worse, every 3 or 4 months i'd loose more of my strength with unelievebale all over body pain and spasms, I begged God for death as soon as possible as i just couldn;t deal with so much pain. i tried every medication on earth with no result.
Then finally, few weeks ago, i received my als diagnosis, i have to say that now that my muscles all almost dead, the spasms are less painful, expet in my head. ..
I am now very weak, i can still walk few steps, and move my limbs but i feel i have absolutely no energy left and probably not along time to live. I have shortness of breath and i do;t want to get any oxygen as I'm ok with whatever nature has planned for me...
Now, I ll turn 32 in few months if i'm still here, and I am so sad for my parents, family, and I haven't even told my friends what is happening with me, i don;t know how to tell them that i'm going to die soon and that the young active friend they used to have is not there anymore... i don;t know how to say that, because I want them to remember the old me , this disease was never planned, not at my age... I also see my mother crying every day when she sees how i became, and i can see that my father has stopped living too, you have no idea how this is heartbreaking to me. it should be the other way around, i should be taking care of them...
I am also missing my filmmaking carreer which has stopped right on its tracks when i was starting to finally work on my own projects...
HOW do you accept this disease? I believe in God but i still don't understand why he did this to me? WHY? Do you really think God exists? do you really think we will go to heaven after this? do you believe in those things? I have accepted death but somehow i want to believe that there is sth after death because this whole thing is profundly absurd! because i will miss films, literature, poetry, music, food, all og those things i enjoyed so much...
Thank you so much for your time i now you're struggling as hard as me, I know thatb ut it's just so hard!
 
Hi Filmmaker,

Sorry you have gotten this diagnosis and are having such a hard time. I really do understand as I have been through a very similar experience. I'm 32, and this started for me 1,5 years ago. I was told it was many things (stroke, brain tumor, MS, Wilson's Disease, Vitamin D deficiency, myasthenia gravis, the list goes on). Was also told it was stress and "all in my head" and was even told I had Conversion Disorder! Fortunately I saw two excellent psychiatrists who assured me it's not in my head and to get a new neurologist! So now I have seen three that all say I have ALS, so it must be true.

It is indeed very hard to cope with it and there is no one right or wrong way to do so. But really, you should tell your friends as soon as possible because you need their support. Yes, they will cry, maybe not in front of you, but they will, just as you do the same to not cry in front of them. But you need them and they need you and you all need time to work your way through the crazy emotions that come with this diagnosis. Your family needs some time to work through this too, but you try to stay strong and give them some strength and hopefully they will soon be able to do the same and you just keep lifting and building each other up from there.

As for questioning why God did this to you.... that's something only you can find an answer to in your heart and come to terms with it. But I will tell you what I believe... I believe everything happens for a reason and it's not for me to question why. I don't blame God or anyone... blame gets you nowhere... it eats you up and consumes your time and thoughts and life and that doesn't help you or anyone else. I just do my best to accept what happens in my life and make the best of it, because that is all that is in your power to do. I did not always think and believe this way, and my life was a pretty unhappy one. But in the years since I have taken this approach, I have a lot of calm and peace and find that life really is what you make it. So until the day comes (if ever) that I see the good that comes out of me having this disease, I will just do my best and live my life as awesomely as I can. I hope maybe in some time you can find this same peace and hapiness that is there for the taking.

My thoughts are with you as you work through all your emotions and feelings. And know that everyone here understands and is with you all the way.

~ Sarah
 
Filmmaker. God did not do this to you. I understand where you are coming from so sorry you are going through this as well . I turned 46 in December I also was very ative. I was very healthy or so I thought . I read my bible daily . Jesus gives me the peace and acceptance I need to live with and well as fight this diease. I am not giving up ever. And you should not either . Fight with us.
Praying for all of us
Hugs Felica
 
I am very deeply moved by your post. I am a caregiver to a dear friend with ALS and we pray and meditate together and it has helped us both greatly. I do believe strongly in a glorious life in the after~life and have had glimpses of it myself. I know that I have questioned God many times too....why do things happen to wonderful people? I have found great peace in meditation and I hope that you feel the love and support that is there for you on this site and in the world. Thank you for reaching out...sending you waves of peace and love!
 
It's tough to cope but you can't just curl up. Try to lean on family for support. Don't go through this alone. I pray you find peace and strength.
 
thanks a lot for your help! i know this is atrociously difficult for everyone and i really appreciate your generous heart! I just keep wondering : if my life is ending here, then what was the purpose of it? I had studied philosophy before filmmmaking and i always thought I had a "mission" wheter through writing or images, i had to contribute to celebrate or critisize our world, humanity , whatever.. ut i feel i didn t have time to finish what i started...
Some of you ate least have children, or have accomplished a carreer or whatever, i didn't do that...there must be a "reason"...
Thanks again, and yes I am a fighter, ut sometimes we just loose the battle.
 
Hi Filmmaker,
So very sorry you are with us, sharing in this journey together. I can tell you your emotions will be all over the place and here is a great place to let them out, there are truely loving and careing people ready to listen, offer advise, and lots of Love and Hugs in your time of need.

HOW do you accept this disease? ..........we dont have a choice.
Why he did this to me? ............HE did not put this on you, All Good and Perfect gifts come from the Father of Lights ..............WHY?.......no answer in this life anyway
Do you really think God exists? ............I most certainly DO!
Do you really think we will go to heaven after this?..........Yes, Some will, Those that belive in the One True Father in Heaven, Maker of Heaven and Earth and thru the shed blood of the Messiah for forgivness of our sins..... but not all ask and turn to Him.
Do you believe in those things?.........With all my Heart, Mind & Soul

I Hope this has helped you, It has helped me to help strenghthen me also. There in lies the answer.....Lean on HIM.....When I am weak He is strong......I can do all things thru the Messiah who strenghtens me......I will never leave you or forsake you.........He promised to never give us more than we can handle.........He must think we are stronger than we do, and am pretty sure his judgement is better than mine. How about you?

We are here to help, listen and cry with. Praying for Peace in your Heart.....Hugs
 
Filmmaker, I know how you feel...when this disease first hit me, I was feeling like i was incomplete, that I loved life so much and was just getting to the point of understanding life...but there is a miracle in all this....I have come to believe that all that matters is unconditional love..."God is Love" unconditional love...we dont know much about loving without strings attached. But I am learning that I can live more in one day than I ever lived in a year...because now my life is slipping away, I take nothing for granted. I feel as if I am being distilled into this unconditional love. And the only place you can love is in the present moment, fully attentive, fully alive. Yes, I believe that death is not the end...that this love in us lives on in God. I do not believe in a God who is out to get us...for God is love. All that is good, beautiful, noble comes from God...God did not give us this disease, but God gives us whatever we need to get through if we only turn and recieve it. You are asking the right questions that will bring you a place of peace....what matters besides loving? What do I have to let go in order to be the most loving person? Who do I need to forgive? What blocks me and keeps me from being in the present moment? The future full of fear? The past full of disappointments? Now is what matters!
 
With illnesses we always looked to Job for answers. Do you realize that God told the devil about Job! HVe you considered my servant Job? Totally ratted out by God to bring glory to him in this! What an honor to serve HIM this way, knowing that there are eyes watching you live your testament of faith.
 
filmaker...have you loved, doesn't matter who, friends, family etc. Have you been loved? Have you put a smile on someone's face, helped someone in need, made someone's day better, held the door open for the elderly couple who were several paces behind you and walking very slow, helped the pregnant Mom who was trying to juggle the stroller and carry her groceries? You get the idea. A million little acts of kindness often can outweigh the grandiose accomplishment. If you have touched people's lives then your life has been more then worthwhile, if you have allowed others to enrich your life then you have built relationships that have brought happiness and joy to the people around you.
Remember a smile begets a smile and I truly believe if we measured our life by smiles we have shared with others then we would realize how truly meaningful and impactful our lives have been. Remember there is life after diagnosis and there are plenty of smiles yet to be shared!
 
Filmmaker,
You've reminded us again how ruthless that ALS can be.
Remember , ALS may take your body and strength, but never your heart and soul.
 
I can't answer the WHY for you, but I can tell you what I believe to be the WHY for the people I love who had ALS. My FIL had ALS. He was lost in addiction when ALS was taking hold. He admitted to his addiction and voluntarily admitted himself to a place to detox from alcohol. He got pneumonia while there. He had been having issues swallowing before that, but shrugged it off. Now, he had breathing issues as well. I thought we were going to lose him then, but he rallied around, but dr said something was still not right ran EMGs, MRI, and a muscle biopsy. We finally had a name for what he was going through...ALS. If it were not for my FIL having this disease, he would probably still be addicted, or worse yet, had taken someone's life by DWI. Also, he was able to find his way back to his First Love (God) during the process of this disease, for which we praise God tremendously. He was able to develop a loving relationship with my daughters who helped him out during the summer he was fighting this battle. My FIL lost his battle in Dec. 2008. If my FIL had not gone through this, we would have had no idea what to do or where to turn, when just a few short years later, my sister was diagnosed with ALS(actually started in Spring of 2008). My brother nor my Dad have never really understood ALS and what it can do to people. Because we had gone through this with my FIL, we had an idea of what to expect to some extent when my sister was going through it. My sister wanted to die at home. My father and brother would have been completely lost in caring for her at home had we not gone through this. The good that came out of my sister's course with the disease is that the Home Health people who worked with her, caregivers, and even some hospice workers learned what this disease can do to people when they had not had any experience dealing with it prior to that point. My girls also learned a valuable lesson in caring for family members with love. They have also learned more about compassion helping with the care of my sister than they would have ever learned in school. My sister also learned of God's saving grace and the depth of the love He has for her through the care she received from all involved in her care. Praising God for this too :) God does not cause these things to happen to people. I firmly believe that He allows things like this to happen to people for a greater good (i.e. bring them to Him, prepare another for a similar battle, shape us into who He wants us to be). One cannot have an appreciation for the mountain tops in life if they have never traveled in the valleys of life. Just my view of things...
 
maybe if you are a film maker... maybe your new "meaning" in this world is to make a documentary of this horrid disease to help bring the much needed awareness out there.
Look at Stephen Hawkings. He got it when he was 19. He is now in his 50s i believe. He is a world renouned (sp?) author, theoretical physicist, and a Professor of mathematics at Cambridge. He has accomplished more than most without ALS do.
Look at Jason Becker. This guy continues to right crazy guitar riffs and albums many years after he got ALS.
Look at all the folks here... they may not be able to do the huge things that im thinking you want to do, but as Ted said- now is when you learn that those "little" things are what truly matter.
Get on an antidepressant. Almost all folks with this disease do.
And dont forget... you still have a purpose. even if its just for others to learn from you.
 
Filmaker, you really need to appreciate the fact you have traveled in your life, have been apart of the art scene.... I for one struggle everyday to make it through another work day so my kids and i will have insurance and a home... I WANT to travel so bad, luckily i have been able to start oil painting..Everyday co workers or my kids say something that kill me inside but my psych told me that they do not understand and to not get upset with them...Because of the process of this illness i have become a VERY strong person! Other people fight or get hurt by dumb petty things and these are things i would laugh about. I believe we write our lives to learn lessons and let me tell ya God and my angels have had to bail me out quite a few times! If not for them I would not have made it this far, and when you die and go to heaven you can make films and do ANYTHING you ever wanted to do, I for one will take a long break before I even think about reincarnation..this life has been very trying and will continuously get worse, BUT i continuously get more thankful!
 
You need to tell your friends, it's not fair to leave them in the dark. Friends some are silver and some are gold and others are just users and pieces of crap who don't even deserve the label friend. You have to turn your thinking around, make this positive. You have the know how, and your friends have the energy. Maybe your journey in life was to make a film. A film of you and ALS. The more info we can get out there and educate people about ALS, the more funding and spot light on this horrible disease, and maybe a cure.

Just remember God works in weird ways, it's not always right or fair, you just have to have faith:)
 
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