What IS Our Life

Often times on here I read "I want my life back." I used to say the same thing ... I really grieved the loss of my career and financial life.

But I have come to realize that perhaps it is counter-productive to think in these terms. During my life, I have been many different people - a boy spending all day riding ponies or playing with neighborhood friends, a young man in high school who sought to excel at every non-sport activity, a married man (mistake) who sought to cure my identity, a father raising a wonderful child, a drunk alcoholic, a married man who was romantically in love every day, a grieving widower, an older man trying to take it one day at a time.

And a disabled migrainer.

But throughout my entire life, I have to realize that ALL I REALLY HAVE IS RIGHT NOW. Yesterday is gone. Today I can grieve its loss but I cannot bring it back - simply impossible. Tomorrow is not here and no matter what I do, I cannot make it hurry along (as any 5 year old will tell you on December 23rd). Even this afternoon is yet to occur.

All I have is right now. This moment.

Who I am, the person I want to be, will be determined by what I choose to do and the way I choose to think right this moment.

So in wishing "I had my life back" I was really wasting time and emotion. "I wish I had my life back" was as useful to me as "I want to have a check for $1,000,000.00 USD show up in my mailbox today." Ain't gonna happen so why go there?

I have come to realize through grief and life that the choices I make this instant are the only choices I truly have. The way I react to my migraine episodes is the ONLY choice I have in the matter. I can NOT change my episodes except thru taking the medication and advice of my doctors. I can choose to take the medication or not ... but I can NOT choose when a migraine episode will hit me. All I dertermine is my attitude towards that migraine episode. I can live with it, accept it, deal with it ... or I can use my energy to wish for that which will not be - yesterday or tomorrow.

I have been thinking about this a bit and wanted to share it here. Not criticizing anyone ... just sharing the lessons I have learned over the years.

I hope I can get to your level of acceptance someday Richard. I'm sure it will make it easier to bear.

Charlotte

Me too Charlotte. I try to be in the here and now. Cant change the past, but I do tend to live in it some of the time.....life was good then. Its S*** now. It isnt life its existence. I cant function. I cant be there for my family, I cant enjoy my grandchildren.
I cant believe what life has thrown at me, and it would take something to get me to where Richard it, lovely though it would be.

P

When I say I don't want this life, that is true. It is not the one I would choose. I don't even know what life without migraine is. I am grieving. And I refuse to feel the pain of guilt for that grief overlaying the physical and emotional pain I already have.

That I, or any of us, have survived this long with this disease says tremendous things about our strength.

that I, or any of us, have survived this long with this disease says tremendous things about our strength.

I was told by a very perceptive and good healer that it was my strength that was stopping me to get better.
She kept telling me to just "stop". I still dont really understand what she meant, but my husband says I am always "on".
My mother was proud of her strength.....

I am not saying the healer was right, but I often think of her words.

Pen,
I think that there may be different definitions of "strength". Sometimes strength means giving in to our feelings and letting go. Does that make sense?

paradox wrote:I hope I can get to your level of acceptance someday Richard. I'm sure it will make it easier to bear.

Charlotte

yeah i agree, what richard said makes perfect sense, but i havent got to that place yet,

I mourn for the life that could've been. It's like God have given me a chair, but I'm only allowed to sit in it in small increments, and just long enough to let me know what I am missing. I've been given talents and the strong urgings to pursue them, and I do so, on a regular basis all my life. And then every few days, WHAM to the head and I have to stop in mid stride. I am so content to live my life in the moment, but the moment keeps getting snatched away.

Angela

Anna wrote:Pen,
I think that there may be different definitions of "strength". Sometimes strength means giving in to our feelings and letting go. Does that make sense?

Yes Anna it does. I just dont seem to let go and relax mentally. Physically I am good, but mentally I am crap.
I was brought up to fight, and I guess I cant stop. It sounds strong, but its actually stupid.

I admire you Richard, for your level of acceptance, and more so your eloquent way of capturing and phrasing things. However I don't think I am even near the point of envying that perspective yet. That's how far off I am.

I am pissed. I feel robbed. The me inside is not in sync with the physical me over the last 2 years. I have sports to be playing....a huge social network of friends we've worked hard to stay in contact with over many years.....a playful and physical marriage...and two amazing kids to run around with and take to amusement parks and care for and a sick dad I want to pick up the slack for, as he has done for me so many times.

The me inside could have juggled all that...and happily...just 2 1/2 years ago.

Whatever changed HAS to be able to UNchange...no?

I'm not as optimistic or hopeful of that as I once was....but I am not OK with the loss I have suffered bc of this f@%$#%$ disease.

(Steps down from soapbox b/c the nausea has peaked and I need my ice pack )

I try to stay as positive as I can. I often take my medication and go out anyways even if I think it may hurt. I have to live! I'm 22 years old and I can't spend the rest of my life stuck in my house hiding from the world. I am not going to destroy my life that way because this may be the only chance I have at this living thing. I am not going to let this migraine disease get the best of me.

I think actually I am a lot more positive than most. At first I had a really tough time and don't get me wrong I still break down and cry about it, but I have come to accept it a lot more now. I don't think anyone has good days 100% of the time. Nobody with chronic pain stays positive all the time. You can strive to achieve that goal which is wonderful, but don't beat yourself up if you have an unbearable day and veer off track. Just live, and live without regret as much as possible.

I have a hard time knowing that when my bad days hit, they effect my little sunshine. She is the most important thing in the world to me. I envy all the migraneurs out there who turned chronic after their children were older. I feel like I'm missing out and more importantly, she is too. This is my biggest hurdle and unless you have been there, I don't think you could relate. There is nothing like the look of sheer disappointment on your childs face when you can't do something they want to do because you have a migraine again. Worse, when you can't get out of bed in the morning and your baby is crying in her crib and all you can do is sit and wait for your medications to kick in. Those are the days when I really want to kick my own @$$.

I feel terrible knowing that this disease runs in both families and my family is horribly chronic and to know that she too may have this one day makes me want to rip myself to pieces. Had I known all I know now, I might have chosen different paths in my life...I'm not sure. Nobody wants to see their child suffer, I just hope every day that she grows up and escapes it. She is too much of a bright happy soul to have this pain. I can only hope that my raising her and the way I teach her and handle my own pain will help her deal with hers if she does have them too, which helps me stay positive as well.

It is great to be positive all the time and if you can get there, man I admire that. I am happy with my balance of good and bad though. I think when I get to the final days of my life (which will hopefully be far far away) I won't regret how I lived my life and that is what is most important to me, and that is where most of us should strive to live IMHO.

Thanks for sharing this with us, Richard. Your eloquence always gives us something to ponder and hopefully improve our perceptions of our lives.

I have not yet reached your level of acceptance, but I'm trying. I know that when God closes a door, he opens a window. I'm holding hope that the window God has or will be opening will bring new opportunities to learn and grow. We need to keep our eyes open so we see the opportunity that is presented to us.

The bad days have a tendency to knock us down a few notches, but we must keep going. Two steps forward and three steps back......keep on trying.

Becky

Yes, it is hard to struggle with the here and now. It is hard to accept this season of life.

I joined Facebook last April and have been connecting with friends from high school. It's been nearly 22 years since we graduted, we're all starting to turn 40, and I've been doing a lot of reminiscing. I give everyone the abbrieved version of my neurological illness and my current season of life.

Yes, it sucks.

I forgot to mention my failing career. One that I have put 12 years and my heart and soul into. Opportunity that I now miss...relationships that are now broken.....possibilities that could have been, if only I felt better.

That part really gets me sometimes too.

I think we can all only measure our own loss, no one anothers. It is very dependant on how much our lives have truely changed bc of M. Some may be much more drastically changed than others. Also, It depends on how severe our symptoms are as well as how much control/relief we are able to get from it.

I do agree that we should try to be optimistic as much as possible. And I know I have been a negative nancy on this one Maybe with time I will be better? I am still in the after-shocks of the earthquake that has shattered my life. SO much has changed in only 2 years, I still very vividly remember "the way I used to be"

Don't get me wrong....I don't sit in the dark and pout 24/7

I work full time and am very active with my kids. I do Kyuki-Do with my boys and go to the gym. And I still even go out with friends a few times a month. I have not given up living my life....It is just SUCH a struggle now and SOOO modified compared to how I used to be.

ok. Sorry if I am bringing this thread down...lol I don't mean to!!! I just feel so robbed still, I guess, so I need to let this steam out when I see a forum for it!

Thanks for letting me vent guys!

Thank, Richard, for such an honest and open post. At 61 I am coming to many of the same conclusions - but reading your email crystalized a lot of my thinking.

For the younger folks - my biggest regret is that when wonderful moments happened, I didn't stop to be thankful right there and then, without any thought as to what would come next. As it turns out, it really WAS is the journey after all! And still is.


Molly

It's hard for non migrainers to understand the strength it takes for us to get through each day.

My husband tries to understand...but as I go into our bedroom and turn off the lights at 7pm, and he's left on the couch alone, I think it hurts his feelings.

I don't know how to relate my pain to him. He's hardly ever been sick a day in his life...never a surgery, nothing.

I find myself withdrawing from him...I don't know why. I don't want to....but I feel guilt. Guilt that his new wife of not even 2 months...is sick in bed. My pastor that married us told me the other day..."Laci, were you there when he took the "for better for worse...in sickness and in health" vows? Because I was."

I know he took those vows, but still in 2 months of marriage, he's had me in bed for 35 days or more....and also dealing with me having a biopsy on my cervix next week.

I was normal while we were dating and engaged...I fought hard to be normal and feel good....but I can't fight right now...I'm tired!

I know we all have these feelings of sadness, remorse, loss, etc....And it's good we have each other to talk to when we feel no one else understands.

Howdy All,

Thank you for the compliments - I appreciate them and am truly thankful.

I want to expostulate a litte more. I am not saying that being positive is the best way to be or the only acceptable response. We are all human - delightfully human. But remember, all we have is the "right now." Yesterday is gone and tommorrow will come when it will come. Can't change yesterday or tomorrow - they are what they are.

But we can make decisions about what right now.

We all have thoughts, feelings, and behaviors. For me, my feelings are the hardest to change. I can easily change my thoughts right now. I can easily change my behavior right now. And lo and behold, when I change my thoughts and my behavior ... the feelings follow along.

Monday, yesterday, I had a few errands to do - including seeing a doctor about my lump (whew, good news). But by the time I was supposed to go grocery shopping I knew that if I wanted to drive home safely, I had to start NOW. So I did ... and did not go grocery shopping. However, I knew I was passing a convenience store down the road a piece. Thom needed milk - he uses much more than my roommate or I - and we were completely out. I could choose to stop at the convenience store or not. I did NOT desire to stop, for a moment my feelings were actually resentment that Thom needed milk! I wanted to get home before the real craziness began in this migraine episode. But I thought to myself "what is the most loving thing to do?" I stopped, bought milk, and went on my way safely home. And deciding to change my behavior, to lovingly, erased the resentment and my heart was at peace and again in warm love. My feelings changed when I changed my behavior.

I had a choice to do the loving thing I really did not feel like doing or to do the loving thing and stop and buy milk. I chose in that "right now" moment to act lovingly. Glad I did so.

YES, right now I may need to grieve my losses - my husband, my Dad, my career, many friendships, my sex life, etc ad nauseum. Sometimes grieiving is the right and loving and necessary activity for me. So I grieve. And then those feelings are out and I can move on.

I CAN change my thoughts and think of things in positive terms - hard to get used to doing, but most pleasurable.
I CAN change my behavior and do that which is most loving.
IF I change my thoughts and especially my behavior, then the feelings will follow - trust me, they will.

So I am NOT laying a guilt trip on anyone for grieving. Not at all. I am the current MASTER of grief!

And like grieving for a husband and father, I have grieved the changes migraine disease has made in my life. It is true that you never get used to your losses ... BUT you DO get used to them I will NEVER "get over" Steve. I am growing used to his traveling on before me.

So please, NO ONE feel guilty for grieving losses. Never. But likewise, do realize that yesterday is gone and tomorrow is a dream. What you have is the "right now." This very instance. And as humans we CAN change our behavior and our thoughts and the feelings will follow.

We all suffer from a dreadful disease of the brain. It is a horrible disease. But right now, migraine disease IS our cross to bear, our challenge to face, our lot in life. Frankly, we can NOT change our health. Read this forum for the many who have tried and failed. Migraine disease IS a fact of our lives.

But given this fact we can NOT change, we CAN change our thoughts about ourselves and our lives. We can act as we choose to act. We CAN say to ourselves "OK I am a migrainer. Now how should I act lovingly given this fact that I can NOT change?" Educate our loved ones? Listen to our friends and loved ones express their feelings about our disease? Choose to spend "good time" acting lovingly with our loved ones whatever that may be?

I do not know if my rambling clarifies anything. I just had to state as clearly as I know how that there IS a time to grieve and there IS a time to accept, and there most definitely is an opportunity RIGHT NOW to stop and smell the roses, enjoy the beauty of the snow, hug a child, or snuggle with a loved one, or to lie in a quiet-dark-room and deal as best we can with our disease.

Thoughts-Behaviors-Feelings ... if we change our thoughts and our behavior, the feelings actually DO follow along quite nicely.

(off soapbox)

Richard - I have always appreciated your words..............the road to acceptance is long and treacherous and some days I travel that road better than others. For me, I need to remember: It is what it is. I am learning very slowly to wrap my life around my migraine episodes. I have a dear friend who at the end of the day I can call and vent and cry about what I didn't get to do or how I let people down and she very patiently listens - she gives me a wonderful gift every day for which I am very grateful.

Every day my migraines cause me to fade out - to leave for an hour or two and then I am exhausted and in pain and can't function. I own my own business and it has suffered and my husband can't count on any sort of normalcy from day to day.........but I do get out of bed every day and I keep trying.......maybe that is acceptance or I am just hopefully optimistic that my brain will behave that day. I don't know.......but what I do know it is essential to have people in your life who you can talk to or cry to who help make the road we are on easier to travel. My friend wrote me the following poem............she defines winning by continuing to put one step in front of the other:

At the start of each day in the light of the dawn.....
We wake and we stretch and then start to yawn.....
The pain of the night, the uncertainty of day....
Why do we choose to go on in this way...
The body constantly fighting the mind....
Day after day- peace so hard to find....

But time and again we continue to fight....
Push through the day and into the night.....
Our bodies may stop us in mid- this or that....
Knocking us down till our face hits the mat....
But hard as it is to keep thinking "it can be done".....
Deep down we know "it can be won!"......

We are strong beyond measure--- of that there is no doubt....
We continue to try---- till we figure it out.....
There's nothing ahead----- we cannot make it through......
We know our direction----- is tried and true.....
Tomorrow morning we will do it again------forever knowing that we will win!

Richard and Jewishmother - thank you for your posts (brought a few tears..the good ones). Lately I've been getting to the point of wanting to give up. When this cycle started so many months ago I determined I'm not going to let this thing beat me and I'm going to live my life the way I want to and deal with things as they come up. Over the last 4 months, it has definitely gotten harder - why I don't know, more pain and symptoms. I had sort of forgotten this and the M has been running my life lately. It has become my excuse not to do something...

Our attitudes and behaviors shape the way we live our life. Yes there are days that are much harder than others but even if we didn't have this disease, there would be something else to contend with. That's the thing about life, it takes a turn and you wonder what would have happened if you'd have gone the other way...it could have been to something worse.

There are days I can't leave the house (not able to safely drive) but I get up everyday with the intention of accomplishing things I would have before. I've seen what happens to people who lay in bed all the time and "play poor me" they lose the ability to accomplish the normal (my granddad was one of these). I'm still determined to live my life as normally as possible (and possibly invest in a bit more makeup so I don't look quite so ill sometimes) and to take the bad days when they happen. If the M beats me one day, get up and try again tomorrow. A lot of this disease is learning to cope with it. How to take care of yourself, mentally and physically. I know that once this cycle does break, I will still have episodes...it never completely leaves and the coping skills are still going to be a big part of my life.

Thank you both for the kick in the behind...I needed it.

Holy words Richard.
The attitude of the "carpe diem" should be followed by everyone.
Your lesson is a very good example of how to deal with a chronic disease. I completely agree that we have to learn to co-live with something that can make us continously change programs and choices.

The only note I would add is that many people here want A LIFE, not their own past life.
As you say, we are humans and we are made to LIVE, i.e. to move, to interact with others, to enjoy the world.

So, I think that "I want my life back" often means "I want to live day by day, but LIVE".
Some of us spend 90% of their time in bed with pain. Life passes by and they cannot catch even a minute of it.

Thank you Richard for you post, I read it with interest.

To sum it up - our life is CRAP!
but we should cherish it...?



Risa

Risa, your posts unfailingly make me smile, whether you try or not (just your avatar does it). Thank you for your wit--it often makes my day.

Becky

Howdy Risa ... love your wit, love your insights. "Our life is crap but we should cherish it?" Let me look at that.

First, it is not "our life". It is "My life" We each have our own individual journeys to make through life. I am/was very close to Steve, Mom, Dad, my family, my friends ... but each of us has very different lives. Just as you and I do. "Life" is very individual. I will never know the struggles of a single mother - even though I was a single father. White males handle single parenthood very differently - white-male-prvlege helped me a lot. Likewise, you will never know what it is like to be gay. Very individualized lives.

So let's make it "My life is crap, but I should cherish it."

"Crap" I need to ask "Compared to what?" Would you like to be The President and be healthy, active and have half the country publicly hate you as you are responsible for war and unemployment and highways and almost everything? Not me! Would I like to be a young Vietnamese girl, traffiked into human slavery where I was forced to work all day and get raped all night? No thanks. My life compared to Marc's? No thanks. My life compared to Pen's? No thanks. My life compared to my healthy brothers? Even then - no thanks. I am HAPPY to be me - gay, migraines, and all. I honestly do not desire anyone else's struggles and griefs. Even yours.

Anyone want my life? To live a life of expected white-male-privlege except you are constantly discriminatied against for who you love? To have my migraine episodes instead of your own? I bet not.

I would be "happy" to win the lottery - yet, I know that lottery winners do not necessarily end up either rich or happy after a few years. Maybe I am best off dealing with the challenges in my own life - I am "comfortable with" and I know those challenges AND I have the where with all to meet those challenges.

No, Risa. My life is not crap. My life is my life. Period. And I don't desire to live anyone else's struggles - my own are difficult enough.

So let's make it "My life is my life, and I should cherish it."

But I have problems with the word "should." That is a moral imperative word. The question is "Is it better to curse my life or to accept it neutrally or to cherish my life?" Tough question.

Did I curse the fact that others have long marriages and my very happy marriage to Steve was cut short? At first and for over a year, YES! But I have come to appreciate the fact that so few humans have what Steve and I had. I now treasure my marriage to Steve for what it was - not curse it for what it wasn't. And I have to admit that I am happier for doing so.

So, I suppose I do mean to say "Yes, it seems to mean that love and joy and peace come to they who cherish their lives and are thankful for this "right now."

So instead of "Our lives are crap and we should cherish them?" I am saying

"My life is my life, and I am thankful to be alive right now."

But again, love your wit Risa and especially your ability to say a lot without many words.

Almostangela wrote:I mourn for the life that could've been. It's like God have given me a chair, but I'm only allowed to sit in it in small increments, and just long enough to let me know what I am missing. I've been given talents and the strong urgings to pursue them, and I do so, on a regular basis all my life. And then every few days, WHAM to the head and I have to stop in mid stride. I am so content to live my life in the moment, but the moment keeps getting snatched away.

Angela

Yes, this is exactly how I feel so often. Thank you for saying it so well.

Anna

Once again, Richard been eloquent. Your philosophy is one that I try to follow. I was just talking to my mother who worries and prays about me all the time. I told her to pray but not to worry. Life is what it is and it will be what it will be. I have chosen to accept where I am and what I have to deal with. I don't like it much of the time, but the other choices are not good, so here I am.

I will always look for an answer to my pain, but I try not to obsess or mourn too much the "life" I sometimes think I have lost. Since I've had almost 40 years of dealing with this, and 21 of that as a chronic migrainer, this IS my life.

I've had absolutely wonderful moments and some really bad times. I've raised two wonderful kids to adulthood who have a sense of compassion that is missing in a lot of young people. They've seen pain and in my daughter's case, experieinced pain first hand, and are much better people for it.

Life never gives you exactly what you want and our choices are to accept and live life as best you can with what you have, or to waste energy mourning what we have "lost". I do sometimes still waste my energy mourning my "lost" life, but I try to spend more enjoying where I am, even if the only smile of my day is a joke about how crappy I feel.

Alli