The depth of love can be measured by our efforts. We demonstrate our love when we take that extra step.’
–Harville Hendrix, M.D.
Enjoying a healthy relationship can be one of life’s greatest joys and at the same time, one of life’s greatest challenges. Yet, most of us wonder, what does it take to nurture and sustain a fulfilling relationship when one person has a physical challenge and the other person takes on the role of a caregiver?
If you, or someone you love, have lived or are living through the challenges of keeping a committed relationship strong, despite a chronic illness, then you may find in the upcoming monthly articles, and excerpts from my new book, IN SICKNESS & IN HEALTH: Practical Tools that Take Care of the Caregiver, fill in some pieces of the puzzle you have not yet explored.
This is the first in an ongoing series of articles that provides personal, practical tools, and guidelines, designed to support you and your partner in renewing connection, building trust, respect and intimacy with your partner, despite the physical challenges you may face every day as an individual and as a couple.
My intent (of these articles, for the next few months in this ‘Healthy Living’ space), is to share practical tips and (real-life) examples, designed to support you and your partner, or caregiver, to strengthen and deepen your bond that moves you forward into greater intimacy in your everyday lives, despite a chronic illness.
With practice, by applying many of these tools and life skills, you may lessen the strain a chronic illness can place on your relationship.
For example, by applying the skill of ‘Active Listening’, you may successfully transform many of the issues with which all couples face, including mine) — struggle: intimacy, couple communication, conflict, meeting each other’s needs, and making time for pleasure
In this book, and counseling with us, together, we create the opportunity to remember why we had committed to each other in the first place, the valuable partner each of us is to the other, and then give us tools to use every day to deepen our love and commitment to each other.
My husband, Michael, and I have been married for 37 years. I was diagnosed with MS, two years after we took our vows in 1979. We had made the commitment to each other to love, honor our similarities and differences, include all our circumstances positive or negative and support and grow old together.
All committed relationships face obstacles. Having a chronic illness such as debilitating arthritis, AIDS, cancer, diabetes, chronic fatigue syndrome, Fibromyalgia, or depression, can take an overwhelming toll on even the best of relationships. You can be certain the partner who is physically or mentally challenged also remembers the way he/she used to be, or felt, before the illness or injury. And the person who’s not sick may not know, or be sensitive to, how to handle these sudden changes.
Through the years, due to the steady progression of MS, I currently have limited use of my legs and hands. Sometimes, I get so frustrated with myself when I can’t do things I once could do easily, (navigating buttons or zippers, for example), or I wake up too fatigued to attend a concert, seminar, or dinner with friends, that both of us had been looking forward to.
Spouses may find themselves filling both the role of spouse, caregiver and nurse. And, they may be feeling more like a babysitter than an equal partner in the marriage. Even in the best marriages, it’s hard. There are times when Michael needs me to listen when he tells me he feels trapped, out of control, and helpless. I understand. It’s part of the human condition. I am aware that, in order to restore, and or expand the integrity of my marriage, it is MY responsibility to be silent, take myself to a neutral place inwardly, and let him speak, without my interrupting him or adding my version of the story. Silence is Golden.
The strain may push both people’s understanding of “in sickness and in health” to its breaking point.
Again, I am aware that it is MY responsibility to ensure the integrity of my marriage, to NOT project my fear, disappointment, anger or frustration at my condition onto Michael. It’s just unfair and insensitive.
You and your partner can learn and practice many tools and life skills to lessen the strain a chronic illness can place on your relationship.
For example: Tool #1: WITHOUT INTEGRITY, NOTHING WORKS
My husband Michael loves martial arts. On Saturdays, he has a martial arts class that he looks forward to all week. Recognizing this, I have made it my responsibility to make sure that I get home care coverage on Saturdays so he can get to his martial arts on time.
In my world, that’s just one of the things that I’m responsible for. But in any given week, it might be difficult to arrange for coverage on a Saturday. Or I might be feeling low, and would much rather have Michael by my side than a home-care person. He does so much for me, during so many days and nights. But ultimately, I have to be responsible for making sure Michael takes care of himself, because if I fall short on this commitment, he cannot be responsible to me.
This is not a rule that we’ve created. It’s not an obligation for us. It’s simply a habit that we have made part of our lives—just one example of the habit of integrity that I try to practice every day.
I begin with the HABIT OF INTEGRITY because I believe it’s the underpinning and the foundation for what works.
Fundamentally, it’s easy enough to understand what we mean by integrity and what actions I need to expand it. Ultimately, it means being true to yourself.
That might seem clear and simple. But to make a habit of integrity requires something else of us. It requires discipline to keep your word to yourself.
I realize that may seem abstract, which is why I gave the example of Michael and me and our understanding about Saturdays. To begin with, we love each other (more than words can say!) and we have been married for many years. Early in our marriage—before I had MS and before he became the partner looking after so much of my care—it would have supremely simple for him to say, “I want to go to a martial arts class every Saturday.” How easy! He would go to martial arts, I’d put in some additional work at my design firm (which I loved doing), or see to some housework, or catch up with friends and family.
These are the kinds of trade-offs that partners negotiate frequently, and it works out well as long as both are honest about what they want to do and are mutually considerate of the other person’s needs.
But now… consider that relationship reconfigured with one of the partners in a wheelchair. She needs help getting out of bed and dressed in the morning. She has limited mobility around the house, and it takes her extra time to do everything. This means, while Michael is enjoying himself at martial arts on a Saturday, she will need a caretaker just to help manage her basic needs.
What should they do now? (And remember, they very much love each other!) Michael could say to himself, “It’s really not fair for me to be away on Saturday and not get home until 5pm. I work during the week, Linda needs help on the weekend, getting a caretaker to come is extra expense and hassle, and maybe I won’t miss my martial arts class after all.” On my side, I could be saying, “I didn’t ask to be an invalid; it’s not my fault that I’m in a wheelchair, and you can’t act like everything is the way it was before.”
My question is, where is the integrity in a discussion like that? Where are we, if Michael tries to deny his love of martial arts and convince himself that he doesn’t deserve those Saturdays? How am I being true to my love for Michael if I act like a victim who can’t do anything for herself and must always rely on him for help? That’s not Michael! That’s not me!
The truth is so much more complicated than that, and to get at that truth means we both have to act with integrity. He needs to tell me about his love for martial arts and how important it is to his physical and emotional well-being. (If he denied that, if he lied about it, just think how he’d be betraying himself!)
I need to tell him that I’m not a helpless victim, that I can take care of myself with the help of a caretaker, and I’m perfectly capable of lining up someone to come in while he’s away. (If I said otherwise, I’d be pretending to be more helpless than I am.) Once we have spoken our truths and recognized our needs, everything else becomes possible. I honor my word—to the best of my ability—to make arrangements for coverage every Saturday. Michael honors his commitment—to the best of his ability—to get to martial arts safely.
Stripping away all your judgments, opinions, gossip, disappointments, expectations, and hurt, in all your relationships,(spouse, partner, parent, children, grandchildren, friend—past or present, relative, neighbor, co-worker, boss, relatives, (yours and/or your partners ), where do you need to expand, forgive, and/ or restore integrity?
This might be in a letter, a phone call, or a personal visit. I would NOT text this communication, send a Fax or Tweet or use any other social media. I also would NOT send an electronic card, or use a Post-It note. From my view, this technology does not honor or dignify the preciousness of your relationship.
It’s a cop-out and diminishes who you are and may lesson your self- respect.
In conclusion, practicing integrity allows us the opportunity to remember why we chose this relationship in the first place, and the valuable partner each of us is to the other.
Next month, I will introduce another tool, “The Art of Active Listening” to use every day to deepen your love and commitment to each other regardless of which role in the relationship you play.
As partners, when we discover and commit to who we truly are, our lives take on new meaning as love and joy are our natural states.
See you next month,
Wheelchair Wisdom – 2015 Independent Publisher Book Award Medalist – Self Help
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