Throwing Bowling Balls

When you are drowning and you cry out for help, the last thing you need is a group of people standing at the water's edge throwing bowling balls at you.

But, this is exactly what happens when we must go through a dramatic change in our lives.

Initially, when a person encounters a health crisis, family and friends may be very understanding and helpful. But, there is an expectation behind the comforting.

Have you ever heard of the phrase "Get Well Soon"?

 Of course you have.

Why do people say that?

Most people are well meaning. They are offering you their hopes that the suffering will be short lived; that your life will return to normal quickly.

But, some people unknowingly have a different intent with "Get Well Soon". They want you to heal... NOW! Right away because your challenge has also become their challenge. They are telling you to be your old self immediately because the changes you are going through are forcing them to change along with you.

Most people know the proper rituals for a period of illness. People will visit you, loved ones shuffle their schedules and pick up the extra work while you recuperate. Meals are dropped off at your home, people provide child care, the closest friends circle around your immediate family and protect all from extraneous stress.

Those are the rituals of a family crisis that has an end in sight. Eventually everyone returns to life as normal.

But, very few people know what to do about a chronic disabling life altering illness. The sense of ritual is lost. Very few of our family and friends are equipped with the experience, knowledge, and stamina required to cope with walking the journey with us.

People will start avoiding you. Some people will abandon you. They do not know how to cope with your challenges and they can not handle their inability to cope. Some people are unwilling to make the effort to learn more and try to understand. Some people were only a part of your life because you filled a need in theirs. Once you no longer fill that need, they wander away.

Those who stay with you encounter a profound loss.

You are grieving the loss of your life as you have known it...
 and those living with you are grieving too.

Without a ritual to designate this experience as a time of mourning and restructuring...
the bowling ball tossing begins.

Think about the Kubler-Ross Five Stages of Grief and Loss:

Denial
Anger
Bargaining
Depression
Acceptance

You are in all kinds of pain and fatigue, both physically and emotionally. You have depleted any reserves you have had within you. You need help in ways you have never needed it before. You feel you are trying the best you can. For some of us that may include Herculean efforts...

which often go unnoticed.

Why?

Because those who are living with you are grieving too. They are in shock. They are dragging themselves through each day just trying to survive. They are in denial. They think to themselves, "This can not be happening, this isn't real, things are going to go back to the way they used to be." They are angry. You may become the target of their anger.

So, you ask for help and you get smacked in the head with a bowling ball! You don't even see it coming and the pain cuts deep.

You may hear accusatory explanations for your health challenges:

"It's all those medications you are taking."
"You sleep too much."
"You are lazy."
"You're just using this as an excuse to get out of doing things."
"You're just trying to draw attention to yourself."
"You're a hypochondriac."
"Do it yourself."

Or the bowling ball is a passive-aggressive hit of "Okay, I'll get to that," but, the help never happens.

You feel like you are drowning.

And those living with you are probably feeling the same thing.

The bowling balls are "Don't Change" messages. These are messages of fear. These are messages of rejection, and painfully, threats of abandonment.

Like no other time in your life you will be driven down to your knees. You will be forced to surrender. Maybe this is the reason that some religions use kneeling as the posture for prayer.

Prayer is the ultimate spiritual surrender. Prayer is a surrender without defeat.

Surrender your ideas of who you are supposed to be. Surrender your ideas of how everyone else is supposed to be. Surrender yourself to sacred silence. Surrender yourself to prayer and in this surrender you will learn discernment.  Empty yourself in order to be filled with all that is Holy.  Empty yourself in order to be filled with the knowledge and power to move forward.

You must surrender to a holy power greater then yourself  in order to get to where you need to be.

Where do you need to be?

In a place in which you are living in peace.

FINDING HELP:

Never surrender to bowling balls flying at you. Abuse in any form physical, mental, and/or verbal is never acceptable. You deserve to be treated with love and respect. And remember, it is never good to suffer in isolation and silence. There is help available for you.

Locate a Licensed Therapist

Hotline Phone Numbers & Links

Bloom Where You Are Planted Online Support at Facebook



REFERENCES:

New Testament, Luke: 11: 1-15

Claudia Black

Kubler-Ross Model

Prayer of Quiet - Catholic Encyclopedia

5 Qualities to Look for in Friends When Living with Lupus

Living a life that goes beyond having lupus control your life means choosing your relationships carefully.

You do not have the energy to expend on people who do not enrich your life.

I am not saying that one should be cruel, but, living with lupus means setting very clear boundaries in regards to whom you allow into your life.

Listed below are the 5 best types of friendship qualities that draw a path towards well being.

1.   LOYALTY



Going through a health crisis teaches you who your true friends really are.

There are painful lessons, because those whom you trusted to be with you through your life may abandon you.

Some people "nice" you out of their lives. They are polite, but the warmth no longer is there.

 Some people stop contacting you because you are no longer of use to them. You can no longer volunteer for this, you can not promise to show up for that. They don't comprehend and don't want to bother to try.

Some people simply vanish. They don't know how to cope with illness, and they certainly do not know how to cope with you trying to cope with the illness.

 Once in awhile you may actually be gifted with the blunt truth, "I'm sorry, but, I can't deal with you having lupus." (I actually had someone say that to me and end the friendship.) Well... that one hurt big time, but at least I knew the reason for the relationship ending.



Loyalty is a person's ability to make a commitment.

When you live with a chronic illness, you may want to consider looking towards people who can maintain a lasting friendship.

Observe how a potential friend treats other relationships in her life. Does she gossip? Does she create "drama"? Does she enjoy the game of "frienemies"; being best friends with a woman one day, fighting the next and back to besties a week later?

You do not need that energy.

Find people who are willing to stay in friendships, this will serve you best in the long run because you will have a friendship that may stick with you when you need friendship the most.

2.   INTELLIGENCE


I am not talking about college degrees and book smarts.

Find people who are intellectually curious. More often than not, they are terrific conversationalists.

They are the friendships that can take your mind away from your daily woes with the art of bringing new knowledge to you.

Intelligence also means having the ability to be really good at something. There are people who are emotionally intelligent or socially intelligent. There are those who have intelligence about certain hobbies or skills.

One of my favorite telephone friends has the wonderful intelligence of simplicity. She is an uncomplicated soul who always brings me back to a deeper appreciation of what is already present in my life.

And in turn, find the friends who share the same intelligence that you hold. This type of friendship will give you the joy of sharing and appreciating your gifts together.

COMPASSIONATE


Compassionate people have the ability and willingness to love saints and sinners equally.

You don't have to have lupus to need a compassionate friend. They are rare and truly a blessing if you ever find one.

You will know you have a compassionate friend when the only thing you ever need to be when you are with her...

is to simply be yourself.

INTERESTING


Life needs its eccentrics and so do you. You may not have the most intimate of friendships with your interesting friends, but they have the talent to make you completely lose yourself and forget your troubles. The interesting friends are the ones who challenge you to let loose you inner weirdness and who allow you to live vicariously through their own adventures.

Interesting friends add the spice to life.

CROSS GENERATIONS


Make sure that your friends come from a cross section of ages. Older friends bring you the wisdom of their own life experiences. And having friendships with older people with lupus gives you the opportunity to meet your own challenges. By learning from those elder than you, you will learn to not only survive, but to triumph.

Have friends who are also younger than you. They will keep you young, but the greater benefit is that younger friendships create an opportunity for you to give back. Befriend younger lupus patients and mentor them if you are able.

The best way to live beyond lupus is to take the lessons you have received and to share those lessons with the next generation.

One of the best things to occur once you regain your footing after diagnosis is to realize that you have friends in places you never realized. You will also learn that you have the potential to make lasting friendships with people you never would have met if not for the lupus.

Relationships: Lupus & Marriage

Updates coming soon


External Links:



 LUPUS: MARRIAGE, FAMILY, and SEXUALITY


DOMESTIC VIOLENCE

 HOW TO GET HELP FOR VERBAL ABUSE      Updated June 2011

Domestic Violence Awareness

Lupus & Kindness

The Magic of Kindness

I. Why Important

Kindness makes life and relationships more pleasant. Amidst difficulties and adversities, kindness is the cushion that smoothens the roughness of the journey. It is the oil that soothes pain. It is the water that helps souls grow luxuriantly into mature well-balanced individuals.

Without kindness, life is often a struggle, a defense, a competition or a fight. There is no warmth and no love. Kindness is the antidote to the epidemic of hate.

Kindness is an indicator of inner strength, for it is the people who are afraid who need to look tough.

II. The Elements of Kindness

Kindness is characterized by certain qualities:

Gentleness — kindness is conscious not to do injury to others,hence tends to be gentle.

Courteousness — its language is polite, and its manner courteous; it never forgets to say "Please." "Excuse me." "I'm sorry," or "Thank you."

Compassion and sympathy — it feels for others: their pain, their fears. their awkwardness, and letting them feel better

Benevolence and helpfulness — it has a tendency to uplift and help others

Pleasantness — it has a tendency to make things more agreeable, pleasant or cheerful

III. Ways of Expressing Kindness

1. Effectiveness in Relationship

How often have we refused to deal with someone simply because of the other person's attitude or roughness. On the other hand, how often have we met kind people whom we find pleasure in dealing with him or her.

Kindness is a magic ingredient that makes people like to deal with you and to respect you. It is a deterrent against deception and treachery.

"Three-fourths of the people you will meet tomorrow are hungering amid thirsting sympathy. Give it to them, and they will love you."~DALE CARNEGIE

"Kindness; a language which the dumb can speak, and the deaf can understand."~ C.N. BOVEE

2. In Giving Feedback to Others

Many times we need to give feedback to someone, either a family member, a co-worker, a friend or a public official. Without kindness, the feedback becomes criticism or fault finding or reproach, and the result is that the other person tends to refuse to listen.

When, however, a feedback is motivated by sympathy and love, the other person will sense this and will be more inclined to truly listen to the criticism, and to correct the shortcoming.

"The only to speak the truth is to speak lovingly."~ HENRY DAVID THOREAU

"Kind words are the music of the world. They have a power which seems to be beyond natural causes, as if they were some angel's song which had lost its way and come on earth. It seems as if they could almost do what to reality God alone can do — soften the hard and angry hearts of men.

No one was ever corrected by sarcasm — crushed, perhaps, if the sarcasm was clever enough, but drawn nearer to God, never."~ W.F. FABER

3. In Teaching Children

Raising children can be likened to growing trees. Expose them early to violent typhoons; they grow up hard but bent and crooked. Expose them to warm sunshine, fresh water, and gentle wind, and they grow up straight, pliable and luxuriant.

Children grow best in an atmosphere of loving kindness. They in turn become sensitive and considerate.

"Kindness is the sunshine in which virtue grows."
~ ROBERT G. INGERSOLL

4. In asking favors

How many times have been asked to do small things by strangers, and you feel glad to grant it just because they asked it so nicely?

"By a sweet tongue and kindness, you can drag an elephant with a hair."~ PERSIAN PROVERB

5. In Soothing Pain and Suffering

Kindness is compassionate. It feels for others. Acts of kindness makes pain more bearable. It can lessen suffering.

"One kind word can warm three winter months."
~ JAPANESE PROVERB

"Ninety per cent of all mental illness that comes before me could have been prevented, or cured by ordinary kindness."
~ DR. WILLIAM MCGRATH

6. In discussing and arguing

A discussion is not productive when each one is out to prove the other wrong. Kindness on the other hand makes us willing to see the truth in the other person's views.

"A gentleman is a man who can disagree without being disagreeable."~ AUTHOR UNKNOWN

7. In Conflict Resolution

Life is full of conflicts with people. Hostility merely worsens the situation. But kindness heals wounds. If someone is angry at you, show your thoughtfulness by a word or a deed. Few people will not soften by genuine kindness. Genuinely think of the welfare of the other person, and you will be surprised that you have gained a friend.

"The fine and noble way to destroy a foe, is not to kill him: withkindness you may so change him that he shall cease to be so: then he's slain." ~ ALEYN

IV Kindness and Inner Strength

Some people have the misimpression that to be kind is to be weak. But real kindness is not weakness. Only pretended kindness is weakness, Real kindness emanates from a virtue, which is love or compassion, while pretended kindness emanates from fear.

Real kindness therefore is not afraid to be firm or to say no, if such firmness or denial will be for the good of the other person. A parent who loves his child will be kind but firm in his discipline, while a parent who fears the loss of his child's affection may use pretended kindness to bribe the child.

"Nothing is as strong as gentleness. Nothing is so gentle as real strength."~ FRANCIS DE SALES

V. Kindness and Spirituality

Kindness being rooted in compassion, it is a quality that nurtures selflessness and a greater awareness of unity. These are the stepping stones to true spirituality.

"Life is short and we have not too much time for gladdening the hearts of those who are traveling the dark way with us. Oh, be swift to love! Make haste to be kind!"
~ HENRI F. AMIEL

QUOTATIONS:

No act of kindness, no matter how small, is ever wasted. -- Aesop

A good deed is never lost.

He who sows courtesy, reaps friendship; he who plants kindness, gathers love; pleasure bestowed upon a grateful mind was never sterile, but generally gratitude begets reward.-- Basil

I expect to pass through this world but once. Any good work, therefore, any kindness, or any service I can render to any soul of man or animal, let me do it now! Let me not neglect or defer it, for I shall not pass this way again.-- Thomas Carlyle

Kindness is the kingpin of success in life; it is the prime factor inovercoming friction and making the human machinery run smoothly. --Andrew Chapman

What wisdom can you find that is greater than kindness.
-- Jean Jacques Rousseau

It is a good and safe rule to sojourn in every place as if you meant to spend your life there; never omitting an opportunity of doing a kindness; or speaking a true word; or making a friend.
-- John Ruskin

Kindness has more power than compulsion. -- Author Unknown

Whenever there is a human being there is an opportunity for kindness.-- Author Unknown

The best parts of a good man's life are his little, nameless,unremembered acts of kindness and love.-- William Wordsworth

Kindness in words creates confidence. Kindness in thinking createsprofoundness. Kindness in giving creates love. -- Lao-tzu

Wise sayings often fall on barren ground; but a kind word is neverthrown away. -- Sir Arthur
Helps

To be able to practice five things everywhere under heaven constitutes perfect virtue. . . . [They are] gravity, generosity of soul, sincerity, earnestness, and kindness.
-- Confucius

Better be kind at home than burn incense in a far place. -- Mencius

Courtesy is the go-power behind all teamwork -- it works wonders.-- Author Unknown

What wisdom can you find that is greater than kindness.
-- Jean Jacques Rousseau

Any good we can do, or any kindness that we can show to any fellow creature, let us do it now for we shall not pass this way again. Stephen Shellet

Whenever there is a human being there is an opportunity for kindness.-- Author Unknown

Copyright 1995. Permission to reprint is granted providedacknowledgment is made to:Peace Center Theosophical Society in the Philippines, 1 Iba St., Quezon City, Philippines

Lupus and Loneliness (originally posted 12/09/2005)

I went shopping yesterday!

Many people would not consider this such an exceptional event, but when you are primarily housebound (like me) a trip to do some Christmas shopping is tantamount to preparing for a long hike in the woods. I packed my meds, bottled water, throat lozenges and made sure to wear warm comfortable socks and shoes.

I had not been out of the house since Thanksgiving.

My immune system is suppressed by the treatments I receive for the lupus, so even a minor cold has the potential of turning into pneumonia.

(woopee...not)

But, I decided... no demanded... that I would go Christmas shopping at least once.

So we did.

And the whole experience was such a shock to my system!

I really felt energized by being in crowds.

What shocked me is how my social skills have really changed.

I don't see strangers anymore.

I look at people and just feel connected. Maybe that is from being chronically ill.

When you have lupus, you have a deeply personal relationship with human suffering.

Everyone suffers in one way or another... so no one is technically a stranger when you look at people from that perspective.

What did surprise me is that people don't look at each other.

Or (this one I had fun with)... the shock people show when you smile at them with a direct look into their eyes.

"I see you! Hello, friend!"

I could be standing inches from another in a store aisle, and they act like you are not in their space.

That is really weird.

I chatted with anyone who got near me.

I must have looked like the village idiot.

I'm not, but I do suffer from a deep terrible loneliness.

When I was diagnosed my world just tumbled away from me.

I went from being an active mental health professional to sitting home alone all day.

My career centered on seeing all kinds of people all day long. And socializing with my co-workers. And then socializing outside of work with church and theater activities that Hubby and I enjoyed.

Oh, and going to restaurants, shopping, movies, traveling.

All gone.

The wound has deepened since my friend, Ellen, died this past September 2nd from ovarian cancer.

Yep... lonely has a way of catching up with you when you have lupus.

It's not just the big changes that can rattle you.

Not everyone with lupus "crashes" the way my body has. Some people with lupus are able to maintain a relatively "normal" lifestyle.

But, that doesn't make someone with lupus immune (excuse the pun) from loneliness.


You can be in a crowd and still feel lonely.


I feel that one of the most frustrating burdens with being chronically ill is the "You just don't get it..." syndrome.


No matter how I try to explain myself to someone who is healthy... well... sometimes it feels rather futile.


I feel that you really have had to walk one mile in my moccassins (or anyone with chronic illness) to tap in to what we are trying to tell you.


If I cancel going out, it is not because I don't want to be your friend.. it is because I am on my butt, exhausted from laoding the dishwasher this morning. That's all... nothing complicated about that.


If I can not talk with you on the phone, it is not because I want to be rude. It is because I have lupus brain fog, and the sound of your voice is causing me confusion (which only adds to my fatigue). I want you to be my friend, but please let me pace myself.


Not everyone understands this.


I lost friends in the beginning.


I think that anyone with lupus can attest to this.


People love conditionally.
There usually are strings attached.


If you change... and whoa nelly... lupus will change you...


some folks will thow out the red flag warning you not to change.


I got that so much it broke my heart.


I was active, I volunteered my time cheerfully, I could always be depended on to give that extra mile. You could talk my ear off, I was a shoulder to cry on, a pillar to lean on...


and then I just couldn't anymore.


My pal, Ellen, told me after she was diagnosed with cancer, "You sure do learn who your friends are."
Yep, you sure do.


And the transition period from losing relationships, healing, and gathering the courage to move forward to new friendships is excrutiatingly painful.


My rescue came in the form of the internet.


Using a Lupus Message Board (AOL) I met a ton of beautiful people who really knew what I was going through.


I do not know how I would have managed without their loving support.


Stuck home all the time, I could still connect with people via the internet.


The correspondences with my online pals is still a primary source of coping with lupus for me.


Having lost my closest friend to death recently has knocked me backwards twenty steps. I can attest to this.


But, even this experience opened my eyes.


I have supportive family. I don't have to look too far for the connections needed to stay sane.


I have a sister with lupus. This has been a Godsend.


Now that I have been two and a half years from diagnosis, my family is able to start talking about all of this.


Family have a tendency to fall into old dysfunctional patterns when a memebr has a health crisis... my family goes for the duck, run and cover... don't talk about it approach.


But, that is dissolving and in the past year I have enjoyed some of the most real, intimate conversations with family... ever.


I fight with wanting to crawl in a hole and drop out of the human race DAILY.


I wake up in the morning and still feel the emotional pain of not getting into my good work clothes, driving a car, picking up my coffe and treat on the way to the office, and doing the career woman thing.
Most of the time I just desparately want to hide under the warm blankets and hope that this all will pass.


But, it doesn't.


Lupus is a tough master... you not only have to cope with the disease. You have to work hard at it.


And I am telling you right now that surrendering to despair and keeping yourself isolated is going to hurt you big-time.


To break your social isolation you are going to need to be brave.


You are going to have to face the reality that you are going to be rejected along the way by folks.


Please do not blame yourself for that.


Many people need to grow in compassion.


I have been coping by trying to give back. I write about lupus and offer this writing to try to make this lupus journey easier for those who are on the same path I am on.


I also keep many interests that have nothing to do with lupus.


There's a lot to be said for reaching out beyond yourself.


Most of the major faiths offer this task as part of your soul's growth process.


When you reach out beyond your pain you are going to be surprised by how many people want to connect with you. You help others and the surprising gift is that you receive the rewards of your efforts seven fold.

Here is an excellent site that explains just why we question our sanity at times when we try to talk to others about the suffering we encounter with lupus:

http://www.healingwell.com/library/lupus/holton3.asp

Thoughts on Being a Caregiver (originally posted 11-28-2005)

Today's entry is written by my husband:



Thoughts on being a caregiver to a spouse / partner who has Lupus


My wife was diagnosed with Systemic Lupus in 2003. She has been ill since 2001. She recently approached me and asked if I would write some thoughts down regarding my experiences as a Caretaker.

My hope is that someone reading this might be able to garner some ideas for themselves. At the very least, I hope that you can relate to some of the experiences I share so that you don’t feel that you are embarking on this journey alone.

I am not an expert on Lupus. I am also not an expert “Caretaker” or “Super Husband”. Some days I do well, some days I don’t. At times I take pride in being a good husband and caretaker, while other days I fail spectacularly. If you’re reading this, I suspect that you fall into this all too human category.

I can’t offer you the “10 easy steps of being a caretaker”. There’s no easy cookbook or guide. Rather, I’d just like to share what I’ve come up with. Here’s hoping that it helps.

1. LUPUS CHANGES EVERYTHING

I remember reading a book by Scott Peck, entitled “The Road Less Traveled”. The first sentence of the book says –“Life is hard.” If he had written a book about Lupus, he might have said it twice.

Lupus changes everything. Her life and yours has just become hard (or harder).

And don’t most of us (including me) kick and scream when life as we know it gets turned upside down.

Consider this example: I remember when I became a dad. It felt like, one minute, my wife and I were a happy go lucky couple. Suddenly, we two became a trio. I became a dad. It was a wonderful (and frightening) revelation when it hit me that I will be a dad forever. In other words, my former life as I knew it had passed away, never to return. I was a dad. I will always be a dad.

I don’t know what your life withyour wife, girlfriend, or partner was like before Lupus. We had a very full, frantic, yet fun life (emphasis on the word “fun”).

We met doing theater.

We continued to do theater together when we were engaged and after we married.

My wife worked full time, eventually decided to pursue a Master’s Degree, and also held down several positions as a professional church musician.

Despite her many responsibilities, she found time to dote on me.

Looking back, I was fairly spoiled.

She gave me an enormous amount of affection, time, and emotional re-assurance.

I was a loving husband.

I worked an extra job so that we could afford to go on vacations (sometimes several) during each year. We went to Disney World at least five different times.

But Lupus changes everything. And how you choose to accept this truth may determine how well you and your partner will adapt to this new life.

Scott Peck was correct – life is hard. However, most of us don’t get into trouble because we believe that “life is hard”.

Most of us get into trouble because we believe –

“Hey! My life isn’t supposed to be hard! My life is supposed to be easy!”

We struggle, we get angry, we feel “entitled” to an easier life, feel that “it isn’t fair”. We get angry, we get impatient, we get (fill in the blank).

In short, we make more misery for ourselves and others when we invest countless hours of energy in the “My life isn’t supposed to be like this” temper tantrum.

However, if we can truly accept that “Life is hard” (or in our case, that “Lupus is hard”), then we can make an accommodation with it. When we accept that this is supposed to be difficult, we transcend it. It becomes a part of our life.

In reading over these words, I realize that I am making this process of acceptance sound easy. It isn’t. The arrival of lupus in our life was an event. The acceptance of Lupus as a part of our life has been a process. A process with many ups and downs. You can easily compare this process to the grief process – whenever we lose that which is dear, we go through many stages toward acceptance. There is denial, anger, fear, bargaining, and finally some form of acceptance. Often we can go through this process many, many times. I have witnessed my wife’s grief process. There are times, for example, when I believe that she has acclimated herself to no longer working. Then one day, she cleans out our spare bedroom. She unpacks a box that contains some belongings from her office. Some times it’s only a few seconds worth of mementos that can bring the grief right up to the surface again.

I too can easily have this experience. It can be something as simple as looking at old vacation photos. There’s my wife, sitting in the sun on the beach. She looks happy, tanned, and fit. Then I am recalled to our present circumstances – my wife can no longer sit in direct sunlight, as it makes her ill. My wife can no longer “boogie board” at the beach. A simple date to the movies can now be difficult to coordinate. Our life has new boundaries.

Whatever losses you and your partner have endured due to Lupus can have a profound ability to stir up a whirl of emotions. In order to transcend these emotions, you must express them and let them out. It’s perfectly normal to feel sad, scared, and very sorry that your loved one feels ill a lot of the time. It’s also normal to feel sorry for yourself, for this to feel unfair, etc. Trust me – I’ve felt a lot of messy and uncomfortable emotions. In order to work through them, you have to acknowledge and dive into them. Think of your emotions as the “doorway” in working towards acceptance. Doorways, by their definition, are things to pass through. The last thing you or your loved one needs, however, is for either of you to get stuck in the process of feeling angry, hurt, and resentful, etc. To paraphrase an old Samurai maxim: “Learn to manage your emotions so that your emotions don’t manage you”.

It took me several years to really accept that “life had changed as we know it”. There are days when I still struggle against it. I will say, however, that when I finally accepted that “Life has changed forever”, my own personal suffering decreased significantly. And it bears mentioning that you will also help to decrease your partner’s suffering by accepting and helping her to accept that life has changed forever. When we truly accept that our loved one has a chronic medical condition, we adjust not only our behavior, but our expectations.

Lupus is not only hard; it is downright frightening and heartbreaking. Over the last 4-5 years, I have watched as my wife has had to give up many things that she loved about her life and ours. She has retired from three professions (teaching, social work, and musician). She can no longer drive a car. My wife loves to read, and there have been times during the course of her illness where reading is impossible. I could list pages and pages of things like this (as I’m sure that you could).

Lupus changes everything, but not all of this change is necessarily bad.

I realize that I have grown as a man, as a father, and as a husband as a result of the Lupus that my wife and I live with.

· I am more mindful of the simple things that my wife, my son and I do together.
· I am more sensitive to their needs. I am less selfish.
· I am more responsible. I love it that my wife and son can depend upon me to take care of them.
· I have become much better at taking care of myself too.

There are many more things that I would like to share and tell you. Right now, however, I have a six year old son of mine that needs my attention! He has been sitting her patiently waiting for me to finish this entry so that we can play “Final Fantasy IX”. I’ll write more later.

Peace

Special Thanks to my Hubby for this contribution.

Loretta

6 COMMENTS:

At 8:14 PM,  kitty said...

Thank you for your thoughts. It really made me put things more in perspective about my own life. I wish you both well and will visit your blog again. - Kitty  

At 10:31 PM,  LuAnne said...

As I read your hubby's words it, once again, has made me realize how lucky we are. My hubby is a gem. He has learned to go wit the flow. He has stepped up to the plate. This illness we have has brought us so much closer. I can rely on him. I know this deep down in my soul and heart. He, like your hubby, is a keeper. Hugs, LuAnne  

At 9:37 AM,  Magogo's Musings, too said...

Loretta-I am glad to have re-found you! Your husband's words are poinant and written from his own pain and growth. Please thank him. Margo  

At 12:44 PM,  Water Tiger said...

Thanks everyone, for your kind words. Hubby really wrote from the heart. I just copied your comments and forwarded them to him. He will be writing more in the coming weeks. :)  

At 1:55 PM,  Matkaja said...

Oh what a gem of a post as well as a gem of a man! Please thank him from the bottom of my heart for taking the time to write such helpful words to newbie hubbies along this difficult path. He may never know how many Lupies have printed this out, or e-mailed his blog entry and begged their significant others to read his words of wisdom. Mine had me fooled. I thought he got it. He is deep in denial. his mom died of MS, so how could he NOT understand? The defenses are strong. I am sooo lonely in my brain, waiting for him to catch up with my reality. I cannot be the person he thinks I am; the person I want to be for him. It is a long process. It would be easier if we were on the road together, holding hands. Thank you for trying to help.  

At 11:52 AM,  Water Tiger said...

(((((Hilja))))) e-mail response