Is my sister somehow less than a dog, or cat or mouse?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.
gatesofgrace
Getting to Know You...
Posts: 13
Joined: Wed Sep 12, 2012 1:53 pm

Re: Is my sister somehow less than a dog, or cat or mouse?

Post by gatesofgrace »

Luongo,

What is the nature of our hearts? Is my heart free to feel as in my youth? Or has my heart become tainted or bound and serve the comings and goings that is/was my life?

Truly i say to you, my heart and the paths apart from the days of my youth, serves far more and was/is bound to much apart from my own self, and my true nature. What one becomes obscures the nature of youth and the freedom that sets one's heart apart from its origins. The irony is regarding those who's hearts suffer so. Whereby the displacement of pain envelops a defense mechanism that enables the soul to endure. It is ironic, because to free one's soul from what is served and to reduce the heart to its purest state, much has to be purged. Yet, as one who purges the discourse of pain, they may only substitute what binds from one measure to another. While the true purging of one's heart, frees the heart from all that is served.

The insight from a freed heart is awesome. Here there is no judgment, for what one had become and is purged, is much like all other souls who are doing the best in the world they live in. One see's that a heart may remain bound to this or that, but judgment has no purpose. The souls need only to be freed.

If this seems like the rambling of an old fool, i will venture no further. For those whom may have uncovered such things, let me know. It would be a joy to hear from you.

ray
User avatar
Luongo
Family Member
Posts: 61
Joined: Fri Jan 14, 2011 3:00 pm

Re: Is my sister somehow less than a dog, or cat or mouse?

Post by Luongo »

It is not my place to judge the hearts of others as pathetic or virtuous. I was merely offering a view. It is impossible to know what will be in my or my loved ones heart(s) when/if this time comes for me, or the same if this happened to someone I know. This is one of the most difficult things a person can face and what is in your heart is natural and not invalid. But neither is anyone else's; it is your heart, your innermost fortitude and driving force... not a cold, calculable problem solvable by efficient logic. The 'truth' in your heart or your sister's or your friends or family or anyone else facing your dilemma is equally valid and most importantly borne out of love, not out of foolishness or selfishness. It's probably shallow and unhelpful to say that you may find solace in this shared love, but after your sister is gone this must persist and your heart's convictions and lamentations both will wither.

I am not a very spiritual person. I try to celebrate my life as I can because when the 'lights go out', there may be nothing else. People with M.S. (or any disease) probably feel life's ticking clock pounding in their head more than normal people. My life is precious and (ironically?) I live a bit more cavalierly than others I know. I'm not above trying to sneak into North Korea or running after wild elephants in Tanzania, frantically squeezing every last sweet drop from the fruit of life that I can. I am pretty young. I hear people my age talking about the future, their careers, getting married, having kids, and know that such luxuries are not guaranteed to me. But my life is precious and I want every single millisecond I can get. Do I deserve less because of a disease I did nothing to 'earn'? My heart compels me to live, live, live. Do it now, do it faster; more, more, I say. Will I in the same situation you face? I hope to never know but realize that I may not be so fortunate.

But neither will anyone else, necessarily. Everyone else's clock is ticking as well, albeit perhaps a bit more politely quietly internally. We are probably more sensitive to it and think that our hearts hear echoes of hope that those who do not face such trials cannot possibly detect. But as I said before, neither is right, neither is wrong... certainly neither are inherently foolish. Celebrate life, celebrate love.

Right, now I'm rambling too.
gatesofgrace
Getting to Know You...
Posts: 13
Joined: Wed Sep 12, 2012 1:53 pm

Re: Is my sister somehow less than a dog, or cat or mouse?

Post by gatesofgrace »

I was speaking to one who was retiring, perhaps for the last time, as he had a few careers. He was fine, yet was realizing his time "doing" is becoming limited. He was about to go on a flight and he mentioned that he wasn't a big fan. He was at the least nervous and scared of the takeoffs/landings. He was looking for some way to justify his fear when he said, "Well at least it would be over quickly and without pain." He had seen horrible deaths in auto's and thru disease.

I didn't return any sentiment, yet was left wandering about the appreciation of life we each realize. Each flicker of time, as we know is finite. It is now! Then the moment has past. Left as a memory for a period of time. What moment therefore, can be fully realized and appreciated? Is each moment to be in the moment; or is the edification after the moment to be more satisfying? If i play my guitar the best i can, i am no longer the listener. The mystery of the melody no longer. The appreciation for the song is somewhat diminished.

No! It is the anticipation for each moment to come that is enduring. Michelle has lost that. That is what i am feeling! An aha moment i suppose. Perhaps why Luongo, you are living as you do, in full appreciation of that anticipation, for as long as you can. You see the finite more clearly than most.

i would like to share if i may, the spiritualist is as much as you in his/her anticipation for all that is shared, in each moment. Only a greater anticipation that is not finite, but mysteriously infinite is realized. It is felt! It is shared! A bridge between the two that endures.
User avatar
Razgo
Getting to Know You...
Posts: 17
Joined: Sun Jul 24, 2011 2:00 pm
Location: Brisbane

Re: Is my sister somehow less than a dog, or cat or mouse?

Post by Razgo »

My wife also can only communicate by blinking and some facial expressions. I care for her 24/7 for the last 15 years.

I fed her through a Nasal Gastric Tube for 8 years and now she has a PEG (stomach tube).

If your sister does not want to continue life in her state anymore and wants the feeding stopped you would have to go through a process of determining if she understands her decision. And that might be something that could takes several weeks to make sure this is what she wants. Does a family member have "Enduring Power Of Attorney" over your sister that they can make these decisions?

In my case my wife has me and she wants to continue in this life and live it as much as she can.

Different hospitals, nursing homes, palliative care have different policies. Hospitals here where i live would just let you die unless you have someone to take care of you.

A lot of people do not understand end stage MS and its no often talked about. But it should be talked about because it is very real and happpens quite a lot. And there is very little support when you have end stage MS.
gatesofgrace
Getting to Know You...
Posts: 13
Joined: Wed Sep 12, 2012 1:53 pm

Re: Is my sister somehow less than a dog, or cat or mouse?

Post by gatesofgrace »

Razgo,

Thank you! I have felt your testimony was out there, and as you say is all too often lived, and not shared. Did you and your wife initially discuss the D.N.R. possibilities early on? I am wondering if her position has changed over time?

Forgive me for my indulgences, as your depth of understanding and love should not be manipulated in any way. I suspect, those who have not shared in it would ever fully understand. I doubt i fully could, only what a wonderful story your wife is. To see the love of her life before her, in lieu of her condition and situation. I suspect she lives, in part, thru you.

Only that is not the all in the matter is it? How often did she complain about the hardship and concerns she has for you in all of this? I know she has! For her to desire and wish to go on, is in part because of the determined unconditional love you conveyed to her time and time again, as she confronted you in this.

Such love weighs heavy on my heart, only because i do not know if i could or would share in it. I believe i would for my beloved of 33 yrs. only i do not know. I know it didn't happen for Michelle. How heavy must it be for her estranged lover to live day to day, while trying to love another while knowing his love is compromised forever. He will never know unconditional love, not unless he appeals to Michelle for forgiveness and the subsequent freedom to love again. She would have given him that, i'm sure. Yet, it is not for him alone to decide such things, was it? How does his new partner deal with that? Another sad testimony i'm sure.

if you don't mind please tell me more...

ray
User avatar
Razgo
Getting to Know You...
Posts: 17
Joined: Sun Jul 24, 2011 2:00 pm
Location: Brisbane

Re: Is my sister somehow less than a dog, or cat or mouse?

Post by Razgo »

Hi Ray, my wifes position on DNR has not changed at all over time. She continues to strive to get better. The hospitals refuse to resussitate anyway regardless of her wishes and my enduring power of attorney which includes medical decisions.

This may be different depending on the hospital? Hospitals take the stance if they do not think you will get better regardless of disease or disability they will not admit you to ICU and attempt to save you.

I have lost count over the years on how many times i have saved her in the back of an ambulance and at home. Although that hasn't happened for many years now as her health overall has had imrovements since 2007.

When you love someone regarldess of their condition be it bad good up or down you act out of love and just keep going.

I once fed my wife 1/2 teaspoon of water at a time over a 3-4 hrs in the morning and the same again in the afternoon just so she could have enough water for the day.

i did that 7 days a week for over 3 years. I never complained once. You just keep going until something changes.

thankfully 8 years later after having a NGT tube and now more recently a PEG tube she no longer starves and is very healthy again today. (she used to be only 19KG)

my point is you never know when things will get bad so i try and live in the "now" rather than worry what might or might not happen and deal with each thing as it comes a long one thing at a time.

So i found i had to adjust my outlook or attitude in life to cope better with the dramatic changes.

Life goes on regarldess of your decisions in life. Those decisions in life you make is what will reflect future outcomes.

russ
gatesofgrace
Getting to Know You...
Posts: 13
Joined: Wed Sep 12, 2012 1:53 pm

Re: Is my sister somehow less than a dog, or cat or mouse?

Post by gatesofgrace »

russ,

Thanks once again! Tell me! Even though you have not mentioned any spiritual connection, is it true that with all that has been endured, you realized you were not alone. Or, once upon a time, when you were feeling totally alone and with little strength to hang on to you... you appealed to a higher power, when suddenly you felt a solace and strength beyond the "I"... of you let's say. I know this place! A path much different than yours, yet one and the same. Is this something you can relate too?

Blessings!
ray
User avatar
Razgo
Getting to Know You...
Posts: 17
Joined: Sun Jul 24, 2011 2:00 pm
Location: Brisbane

Re: Is my sister somehow less than a dog, or cat or mouse?

Post by Razgo »

Hi Ray, yes there is, its called Eckankar.

russ
gatesofgrace
Getting to Know You...
Posts: 13
Joined: Wed Sep 12, 2012 1:53 pm

Re: Is my sister somehow less than a dog, or cat or mouse?

Post by gatesofgrace »

russ,

I see the message shared by Eckie's, although i did not know of the term prior. I like it's foundation (at first glance) as i do with most all religions. i call myself a blenderist (grin) and it seems apparent that the Eckie's are likewise. Sufism i believe is an extension of the same. In fact the divine intent and nature of Hinduism, Buddhism, Christianity, Baha, and others echo much and the same... if one is free to see it.
Within each of these bodies, the divine that has been shared truly remains. Whereby one can see the remnant of all that is good, yes.

This is wonderful, thanks for sharing!

ray
Post Reply

Return to “General Discussion”