By Wayne Connell, Founder and President, the Invisible Disabilities Association
Tomorrow is Valentine’s Day. Many people will celebrate it with the one they love. I asked my friend, relationship expert and New York Timesbest-selling author of 1001 Ways to Be Romantic, Greg Godek, for his thoughts on “love.” This is what he shared.
“It’s all about love (just consult the Bible or The Beatles). But if love isn’t expressed on a regular basis, it withers (just consult divorce rate statistics.) This is where romance comes in (just consult my book, 1001 Ways to be Romantic). Romance is the expression of love. Romance is the action step of love. Now, here’s the secret that is hiding in plain sight: Romance is easy! Romance is really just creativity applied to your relationship. Romantic gestures don’t need to be grand or expensive. Actually, the best romance is the most heartfelt – the gesture that shows you’re thinking of your partner, the little gift that shows you really understand and appreciate him or her. Romance keeps love alive. And while love is desired by everyone, it is absolutely critical for couples who are dealing with invisible disabilities. You need love to sustain you through experiences that other people can’t even imagine. And in order to keep love alive, you have to nurture it every day. Every day. Romance: It’s not just for Valentine’s Day anymore.”
Greg points out that, “it’s all about love.” But what kind of love is needed to marry someone who is chronically ill or in pain? I had no idea that marrying someone who had a disability was a rare occurrence. Yet another great friend of mine, Peter Strople, told me that I was his inspiration because I married my wife, Sherri, who was already living with the debilitating effects of multiple sclerosis (MS) and Lyme disease and unable to work anymore, when I met her.
I know my wife is my inspiration, but I never thought that I was anyone else’s inspiration. Why wouldn’t I have married Sherri? She was and is funny, smart, beautiful, insightful and creative. And did I mention beautiful? I married HER. She is not an illness, she has an illness. I always tell the guys who are in disbelief, “You would have married her, too!” I’m just glad I got there first and besides, I was just getting the “in sickness” part of our vows out of the way.
We need to value people for who they are and not what they have or don’t have with regard to illness and pain. I try to live daily by Peter Strople’s great quote, “When in doubt…love.” Love first and love last.
This concept seems so rare sometimes, but after 18 years of marriage, I am starting to see some hope. I met a young couple this past weekend,Stephen and Sarah Sicola. They started an amazing company that has awesome deserts which are actually healthy for you. If you are in Austin, TX, make sure to check out Taste, AHA! Their company was born out of Sarah’s struggle with an unknown chronic illness. Stephen wasn’t deterred by Sarah’s illness; in fact, it became his mission to not only marry Sarah last December, but also to use their journey to help others with health needs. And those of us with a sweet tooth are mighty grateful he did!
IDA ambassador Antartic Mike Pierce married his wife Angela after she had a horrific climbing accident 27 years ago that broke her bones in 168 places (although you wouldn’t know it by looking at her today because of the invisible nature of her injuries). Mike said “I do” 21 years ago knowing that Angela was not her injuries, but an amazing survivor. Mike valued her for who she was, not what she had endured.
Laura Hillenbrand, New York Times best-selling author of Seabiscuit andUnbroken, has lived daily with chronic fatigue syndrome for the past 25 years. Laura shared in a blog by Tara Parker-Pope that ran in The New York Times on Feb 4, 2011 how she manages her life with illness. She notes that her husband married her knowing full well the struggles she faced because of her disease.
“I’m married. I have a wonderful husband. The house is all set up for me. There is a refrigerator upstairs. My desk has everything I need. Toaster, utensil and bowls, teapot — everything I need. I got married in 2006. We’ve been together since before I got sick. He’s my college sweetheart. We waited to get married until I got reasonably well. I was too sick to go to the reception. I was just at the wedding for a few minutes. He has been through this with me. Some couples it would drive apart; it has drawn us together. We have a deep understanding. He doesn’t see me as a sick person. He sees me as everything else I am. It’s a really wonderful relationship. We had to learn how to do it. It’s not easy at all to be a couple with a disease.”
Relationships with someone who is ill can bring extra challenges. Couples need to take time together, away from discussions of medical issues and bills. They may not be jet-setting off to a romantic island, but they can still do simple things like setting aside regular nights to have a special dinner, watch a movie or play a game. Sharing conversation about things outside the everyday problems and enjoying activities they have in common is essential to maintaining a thriving relationship.
The couples in the examples above knew that their married life would probably not be the same as that of couples who do not face illness or disease, but that the relationships were worth the journey. The husbands believed that although their wives were quite fragile in some ways, they were also extremely strong with many amazing traits to offer.
As in the story of Seabiscuit, people need someone to believe in them and to love them. Love helps in the mending process and makes all the difference. People are worth loving, especially while enduring pain and illness. When I show my wife the love and care she needs, her “brokenness” feels unbroken.
Wayne Connell, the founder and president of the Invisible Disabilities Association, established IDA in 1997 out of the desire to educate friends and family about his wife’s debilitating illness. Soon afterwards, people around the globe began sending emails sharing how IDA had changed their relationships with their loved ones. He is co-author of the booklet, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” Wayne’s background fueled his passion for helping people living with illness, pain and disability. His experience includes that of a professional, multitasking husband and caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a worldwide outreach organization for millions of people living with invisible disabilities.
Originally published at Disability*Blog