Quick Tips for Adjusting to Married Life with a Chronic Illness

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  • Educate yourself about your condition. Learn how to live with your chronic illness. At first it might seem like it is controlling you, but the more you learn and can do for yourself, the more normal and in control you will feel.
  • Recognize your limits and learn to say no.
  • Build fun into your life. Plan some activities for both of you to participate in together.
  • Effective communication is vital for the long-term health of your marriage
  • Focus your physical and emotional resources on those things that matter most.
  • Accept help from others.
  • Share your gifts and talents with others.

Are there others that you would add?

Lessons Learned from Shattered Dreams

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I’ve been reading, again, a book that stirred, invigorated, and challenged me several years ago. Dr. Larry Crabb’s Shattered Dreams is a wise, hopeful, honest, and realistic examination of life’s difficulties and tragedies – our shattered dreams.

ShatteredDreamsDealing with a chronic illness marriage or any other loss in your life can be a genuine test of what really matters to you, what lurks in your soul and mind, the dreams you have or had. Dr. Crabb writes that “shattered dreams are never random. They are a piece in a larger puzzle, a chapter in a larger story.”

From the narrative of Naomi in the Bible’s book of Ruth, Dr. Crabb has learned six lessons – hard ones, wonderful ones, lessons that must be learned if we are to fulfill our true destiny. Necessary lessons if we are to grow into people with peace and power and unspeakable joy no matter what our circumstances. I share them here for your consideration. I recommend you get the book for more insights on these lessons.

  • Lesson #1 – Shattered dreams are necessary for spiritual growth.
  • Lesson #2 – Something wonderful survives everything terrible, and it surfaces most clearly when we hurt.
  • Lesson #3 – Some dreams important to us will shatter, and the realization that God could have fulfilled that dream pushes us into a terrible battle with Him.
  • Lesson #4 – Only an experience of deep pain develops our capacity for recognizing and enjoying true life.
  • Lesson #5 – Not many Christians drink deeply from the well of living water. As a result, our worship, our community, and our witness are weak.
  • Lesson #6 – No matter what happens in life, a wonderful dream is available, always, that if pursued will generate an unfamiliar, radically new internal experience. That experience, strange at first, will eventually be recognized as joy.

As I re-read Shattered Dreams, my sense of what really matters, what I truly long for, my dreams for this life, are being upended. I’m being forced to honestly and radically trust God as He redirects my focus, my loves, and my dreams.

 

Disclosure of Material Connection: Some of the links in the post above are “affiliate links.” This means if you click on the link and purchase the item, I will receive an affiliate commission. Regardless, I only recommend products or services I use personally and believe will add value to my readers. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.” 

Stepping into My Spouse’s Shoes (Guest Post)

This is a guest post from Helena Madsen of Chronic Marriage (www.chronicmarriage.com), a website dedicated to helping couples with chronic illness build extraordinary marriages. I have followed her postings for about a year now and found them to be inspiring and practical. The original posting was titled, Stepping into My Husband’s Shoes.

Photo by Alan Witikoski
Photo by Alan Witikoski

Have you ever imagined what it would be like to step into your spouse’s shoes and view your marriage from his or her perspective?

I’ve often wondered just how patient and understanding I’d be if I were the healthy spouse and my husband lived with muscular dystrophy.

This week I bravely decided to interview Jeff to hear his take on what it’s been like being married to me for the last ten years.  I also wanted to give him the opportunity to speak from the caregiver’s perspective on what works and what doesn’t work so well in a chronic marriage.

When we first met and I told you I had muscular dystrophy, what were your initial thoughts?

I was certainly familiar with the term muscular dystrophy but I didn’t understand what it meant to be honest.  Because I was attracted to you, I had a curiosity to find out more.  The disease definitely didn’t diminish my interest in you.  I remember thinking that whatever this disease is, I’m not afraid of it.  The way I’m going to tackle it is to find out more about it.

Once we married, what surprised you or caught you off guard about living with someone with chronic illness?

Well, early on in our marriage, your symptoms weren’t real obvious but after a couple of years, I started to see limitations e.g. you couldn’t run, climb stairs well, etc.  We had to start monitoring what we did physically.  As the disease has progressed, we’ve had to change the way we approach things.  In some ways, it’s actually been a blessing.  I’ve always been someone who rushes through life, always on the go, and moving on to the next thing quickly.  Muscular dystrophy has made me slow down in a good way.

One of the things I’ve learned about the disease is that we have to be very intentional about the choices we make.  For example, if we’re going out, I always call ahead to make sure the building is accessible and easy for you to get in and out of.  I don’t want our experiences to be diminished because of accessibility issues.  I’ve also signed up to the fact that we can’t be everything to everyone.   We can’t live the jet set life and that’s fine with me because I like the simplicity and groundedness that a slower pace brings to our lives.

What have been the biggest challenges for you?

The biggest challenge for me has been seeing your disease progress and trying to stay one step ahead of it.  For example, two years ago, I saw a clear need for you to start using a power wheelchair in order to increase your mobility.  You and I didn’t see eye to eye on that and it was a struggle for me.  I wasn’t necessarily factoring in your feelings or what kind of emotional decision it might have been for you at the time.  For me, it was more of an objective decision about what was best for you.  My attitude was if it will ensure your safety then why not do it?  I know that caused some friction between us.

In your opinion, what has helped us weather some of the storms and challenges?

I think communication has been the biggest thing.  I think we’re open and honest about what’s working and what’s not.  I think you set good boundaries with me.  I tend to be a very social person and I like to include you in a lot of activities.  When you laid down a boundary at first, I viewed it as a threat.  For example, if we were going out with friends and you didn’t want to go because you were tired or worried about accessibility issues, it was hard for me to understand.  But now that we’ve opened up the communication channels and are honest with each other, I realize it’s not a personal rejection.  I think giving each other permission to do things independently of each other is also helpful.

What advice would you give to a caretaker spouse like yourself?

First and foremost is to keep the lines of communication open.  For the caregiver, it’s just as important for you to express what you’re feeling.  Just because you’re the caregiver doesn’t mean you have to stuff your feelings deep down inside and not share them.  You shouldn’t view them as unimportant or that you’d be burdening your spouse.  You’re not being selfish if you share what’s bothering you.

The second thing is that as a caregiver, you’ve also got to take care of yourself.  If you’re not in a place where you’re caring for yourself physically, emotionally or spiritually, you’re not going to be very good at caring for your spouse in any capacity.  You can’t be there 24/7 and that doesn’t mean you’re bad, weak or a failure in any way.  You just need to be honest with your spouse about your physical and emotional capacity.

And maybe a third point would be to seek out a community of people to provide physical, emotional or spiritual support for you as the caregiver so that you can remain healthy.

What advice would you give to a chronically ill person regarding their healthy spouse?

The big one would be to extend empathy which is not always easy.  Empathy understandably ebbs and flows depending on the day and/or situation.  The tendency is to focus on you, the ill spouse because you’re the one struggling with pain and limitations.  You need to feel loved and cared for by your spouse as well as assured that you won’t be abandoned because of your illness.

At the same time, it’s important for you to put yourself in the caregiver’s shoes.  The caregiver’s life has been turned upside down too.  The world as they knew it has changed and it’s going to take weeks, months and most likely years to get a handle on it.  My advice would be to show a great deal of empathy for your spouse and try to understand how your illness is impacting them as well.  Affirm them, thank them and let them know you appreciate what they’re doing for you.  Tell them if a specific act of service makes you feel well loved and express your gratitude.  Lastly, give them permission to take care of themselves too.

Thank you Jeff for being open and transparent and for offering wisdom to other chronic couples like ourselves!

Are there questions you’d like to ask your spouse but are afraid to?  What might some of those questions be?  Please leave a comment!

For help in talking with your spouse about all kinds of health related issues, check out Helena’s new ebook “For Better or Worse: A Guide to Talking About Illness in Your Marriage”.

Sailing Through the Storms

Sailing Through the Storms Sermon 2012-8-26

You are probably in one or more of the following people groups:

  1. Those who have been through a stormy time in their lives.
  2. Those who are currently going through a stormy time in their lives.
  3. Those who will be going through a stormy time in their lives.
  4. Those who know someone who is going through a stormy time in their lives.

The storms of life can be like real weather storms, tornadoes, earthquakes, hurricanes, etc. They can hit hard and unexpected. They can do major damage, little damage, and sometimes no damage at all. Storms can leave you feeling battered or they can make you realize and appreciate what you have. They can also leave you with memories, good and bad.

I know people that are facing storms in their lives today. Relationships are crumbling. There is increased hostility between family members. Bills are piling up causing stress and anger levels to intensify. Family life, which should be a place of safety and encouragement, becomes a place of anger and distrust.

Where is Jesus in the life of your marriage and family? Have you allowed the storms of life to push God further and further away?

In Mark 4:35-41 we can find some lessons to help us face the storms of life. In the video message below, I share what we can learn from this experience in the life of Jesus and his disciples?

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Click above to view video.

Let’s talk about it: What help have you found to get through the storms in your life?
Leave comments below.

In Sickness and In Health

On our wedding day in 1972, I spoke words of everlasting promise to my wife in front of family and friends. They sounded so profound and so spiritual. Honestly, I was so in love with this woman I would have said anything! I promised her the world! Marry me and you’ll go places!

Decades later we are still married. Still loving each other. The promise of commitment to one woman “till death us do part” have weathered storms with gale force winds and a few bombing raids by enemy aircraft. I have developed a healthy respect for those promises made when it seemed nothing could go wrong.

On a chilling December night, I stood in a hospital room not unlike I have done many times in my pastoral career. But this was different. This night, this room, this hospital was about to find a permanent place in my gallery of remembrances. Cindy, the receiver of my reckless promise of enduring commitment, lay in that hospital bed. The admissions clerk had extended us the privilege of the hospital’s VIP Suite at no extra charge. A private suite of two rooms royally appointed it was reserved for presidents, governors, mayors, and a child of the King. This was a small consolation for the seven months of unexplained numbness, pain and increasing discomfort.

A dozen guesses at the cause, vials of blood for evaluation, electrodes and pin pricks for tests, physical therapy to manage the pain — all added up to nothing. The doctors were confused.

We were pleased to know what it wasn’t, but frustrated because Cindy was not well. We prayed. We anointed. We persevered.

The months before Cindy’s hospitalization had gradually changed our home, our lifestyle, and our relationships. She was losing the ability to independently function in her daily life.

Our two daughters (ages 13 and 9 at the time) patiently and lovingly assumed more household duties. However, I found it difficult to add more duties to an already crowded calendar. The daily and weekly functions that Cindy administered and executed with such expertise had been taken for granted. The necessity of crutches for walking, the swelling of her legs when she would sit-up, the inability to remain at our family table for the complete meal, the restless nights of interrupted sleep, were all draining energy from our family.

I felt so weak when she would look to me for help. What more could I do? You see, like many men, I approach problems with a “fix it” mentality. Often I was able to correct and repair whatever troubled my wife. But what could I do about this? I prayed. I drove her to doctor’s appointments and the numerous diagnostic procedures. I held her when she cried tears of pain, anger and frustration. It didn’t seem to be enough.

None of this seemed fair. There was much to do for God. People to see. Sermons to preach. Seminars to lead. Books to read. Articles to write. But, I remembered my promise — “in sickness and in health.” Our love was being tested. My promise to love was getting an Olympic workout.

The VIP Suite of the Portsmouth Hospital had not been on the itinerary when I said she would go places with me. Yet, here we were. It seemed the last possible diagnostic test had been done. And now we awaited the doctor’s report. A brain tumor? Or would he once again say he had found nothing?

The MRI scan revealed telling spots on Cindy’s brain. Through a process of elimination the doctor arrived at his judgment. Multiple Sclerosis (MS) – a neurological disease, the cause of which is as yet undetermined. It attacks the coating or insulation around the message-carrying nerve fibers in the brain and spinal cord causing varying interruptions of the nervous system.

“Thank you, God, for an answer. Not knowing has been awful. Thank you that it is not immediately life-threatening. But why MS? Why us?” “Why” questions are tough. They are monsters. There are no easy answers.

Over the years I have come to understand that the indispensable basis for an enduring, unwavering and joyful commitment to a strong marriage is an implicit faith in God’s goodness. I stake my life on the certain truth that God would never ask us, his children, to go through anything that does not have our well being in view. God has marked out for us a path that is leading to unparalleled joy for us and glory for Him.

I don’t mean to convey that it has been easy. Life is not unlike reading highly technical books on theology or science or philosophy. There are some pages of information that are hard to comprehend. The only thing you can do is put a marker there and go on reading. Perhaps, later it will make some sense.

Cindy and I have put a marker on this page in our lives and are moving on in our marriage of love and promises. It has been almost ten years since that night we found out about MS. God has blessed us with a growing love in the midst of challenging days. There are limitations, but we are learning to adjust and thrive in God’s grace.

Often Cindy is holding on to my arm as we walk along – a means of maintaining balance and safety. I remember how she was on my arm walking down that church aisle after we were pronounced husband and wife. It was then that we began a wonderful journey of trusting each other for steadiness and safety in whatever we faced – “for better, for worse; for richer, for poorer; in sickness and in health; to love and to cherish, till death us do part.”

© 2000 William Batson – All rights reserved

UPDATE:  Cindy’s disability has advanced to where she has to use a wheelchair at all times. She remains active in ministry with Willie, cooking, swimming, and being Nana to their grandchildren.

Comments are welcomed below.

Wheelchairs and Hotels: The Adventures of Traveling Together

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Because of Cindy’s walking disability and using a wheelchair, we require special lodging accommodations when traveling. It has not always been smooth sailing for us. There have been some funny and not so funny occurrences.

There was that time when there was no hair dryer in our hotel bathroom. I searched for it in other parts of the room, but it was not there. Not wanting to be charged with stealing it, I went to the front desk to let them know about it. “Oh,” said the clerk, “You’re in a handicap room. We don’t put them in there. Do you want a hair dryer?” I was so astounded at the answer that I did not have enough sense to ask why. I simply told them we had our own, but I did not want them to think we walked out with theirs.

What was that all about? Had someone in a wheelchair dropped it in the sink? Did their legal counsel warn them that handicap people are a liability with hair dryers?

Then, there was that time we arrived at a South Carolina near-beach hotel, weary, hot, and expecting a cool, relaxing stay at a relatively nice place. I had reserved a wheelchair-accessible room with a roll-in shower on the hotel chain’s website. This type of room is much easier to deal with than the typical shower/tub combination with a seat. The clerk informed me that the two rooms with roll-ins were already occupied. But I had reserved one. I had the confirmation email telling me it was mine. Didn’t matter to him, the rooms were occupied. I asked if he had other handicap designated rooms with a shower chair in the tub. He said he did not have any shower chairs. What?!

Confounded and suffering from the effects of 100-plus-degrees temperatures, I asked if he had a computer I could use to locate another hotel. He pointed me to the lobby computer. I found another hotel within our price range, but not as nice as this one and not as close to the beach. Once at our new place (with a roll-in shower), I started thinking more about what had happened. That was not good customer service, especially for a member of their loyalty program. So, I found the corporate email address and told them what happened.

ShowerChairThe next morning I received an email from the manager of the hotel in question, with an apology. It turns out that there were shower chairs in the housekeeping department for us to use. She also noted that the desk clerk should have assisted us in finding a room at one of their sister hotels. As a result, she was conducting two in-service training sessions for the staff. All desk personnel would be visiting the handicap rooms to see exactly what was there. Secondly, all desk personnel would be instructed in how to provide better customer service in situations like ours. None of that would have happened if I had not communicated what had happened.

By the way, my email was not a nasty diatribe. It was straight-forward and to the point.

Then there was the night we were sent to four rooms before finding the one with the roll-in shower. However, it did not have a bench seat or portable chair. Back to the front desk I go. I didn’t know what would be the desk clerk’s response to my fifth appearance before her. However, upon hearing my request for a chair, she immediately said, “Mr. Batson, you expect more from us and we expect more from ourselves. I’m not going to charge you for the room tonight with my sincerest apologies.” Turns out their computer system did not accurately describe which rooms had a roll-in shower. Almost before I made it back to the room, she emailed this note which was copied to three other members of the hotel management team:

Mr. Batson,

Thank you for your patience regarding your arrival at our hotel this evening while I checked you into the hotel.  I want to apologize to you for the confusion associated with the roll-in shower in the room.  As the front office supervisor, I take full responsibility for the wrong information that we have regarding the type of showers in the room, and I have used this incident as a personal training tool. 

We rested well that night, especially knowing we didn’t have to pay for it.

Can you take one more? On a recent long-distance road trip we reserved the handicap room with a roll-in shower at a suites-type hotel. Arriving late in the evening, we were exhausted from the long ride in the car over the interstate highway. I was assured the room had a roll-in shower and a chair. Upon opening the door, I saw two wastebaskets in the middle of the floor with the “Do Not Disturb” sign strategically placed next to them. What is going on here? Casting a further glance into the room, I saw a blanket thrown over a chair, a cleaning solution bottle sitting on a cabinet, and the microwave door open. No one was in the room, but it became clear that whoever was cleaning the room that day left abruptly.

Back to the front desk I trudged. I explained what I found and was told that no one was on-site who could complete the cleaning of the room. Okay. Do you have another room? Yes, but it does not have a roll-in shower. That was the only room out of the 72 rooms in this not-so-old hotel for a couple like us. She apologized several times. I know we could have made a big fuss and demanded all kinds of things, but we decided to take a regular room. I asked that some extra loyalty points be added to my account for the inconvenience. Am I greedy?

Just checked my loyalty account to see if the bonus points have been added. Nope. I think I will just let that be.

Let’s Talk:  Do you have any stories about your travels related to a disability or chronic illness?

Welcome to Holland!

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The words “in sickness and in health” have been spoken numerous times as marriage vows have been exchanged. The words are spoken with heartfelt promise and devotion. It is with good intentions that the vow is made between the bride and groom. What happens, though,  when one spouse actually does become saddled with sickness or a disability, and the other spouse remains poised with good health? Without doubt, complications will arise.

Everything changes when a chronic illness enters a marriage – ideas of “quality” time, the way spouses communicate, what they communicate about, their thoughts of equality or shared responsibilities, how they spend their time and money. Every aspect of the marriage may be impacted by the long-term illness of one of the spouses.

Having a chronic illness in marriage is like planning a trip to Italy and, when the plane lands, being told “Welcome to Holland!”

“Holland!?” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy.”

But there’s been a change in the flight plan. You have landed in Holland. And there you must stay. The important thing is that it’s just a different place. You must buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would not otherwise have met. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there a while, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.*

Valerie D’Apice first introduced me to this essay (Thank you!!). In thinking through how to handle this “landing in Holland” realization, she writes:

The secret lies in not focusing so much on what you are missing, but in rejoicing in the blessings you have been given. It involves remembering to laugh often and keeping the friendship alive, much the same way healthy couples need to do in order to keep their relationship strong. It is learning to live for today.

I wonder. How are you learning to live for today while adjusting to the myriad of challenges in a chronic illness marriage? Let’s start a conversation here.

(*Adapted from Emily Perl Kingsley http://www.our-kids.org/Archives/Holland.html )