What I Know About Marriage On The Eve Of My 30th Anniversary

On March 22, 1986, at 2:00 p.m., Alan and I got married.

Our wedding day...so young and in love!

Our wedding day…so young and in love!

We had dated for five years already. We were young, naive and in love. Thirty years later, we are older and wiser but we’re not “in love” anymore. What I feel for him after 30 years has no resemblance to the feelings I had on the day I said, “I do.” At 25, he made my heart flutter…and I thought that’s what love was.

The boy I fell in love with at 21. Isn't he adorable?

The boy I fell in love with at 21. Isn’t he adorable?

At 55, he makes my heart swell…with gratitude and pride…gratitude that we are still together and pride that we have beat the odds (And he does still make my heart flutter…just in a deeper, more profound and more meaningful way!).

Statistics say we shouldn’t still be married. I’m damn proud of us…for course-correcting as we go and for keeping our eye on the prize. There aren’t a lot of folks our age who can say that they’ve only been married once because it’s hard work. There have been many times during our thirty-year marriage when one of us may have wanted to throw in the towel and we’ve both given each other many reasons to do just that. But we didn’t.

So, in a spirit of self-congratulations, I offer you my unsolicited advice on staying married. Wherever you may be on the relationship journey, here’s what I know to be true:

  1. Start by choosing well. We knew enough about each other’s basic value system that we could confidently state we shared same approach to life and wanted the same general outcome. Before Alan, I had never met anyone who looked at life and its purpose through the same filter as me. We shared the same basic philosophy about religion, politics, money and family, although we were too young to have tested any of the theories we held on these topics.
  2. Always respect each other. We may not always agree and we definitely utilize different tactics to get where we want to go but we have a deep and abiding respect for what the other brings to the table.
  3. Understand that if you dissolve a marriage, the issues within that marriage will follow you. The problem with getting divorced is that unless you do a tremendous amount of personal work, the issues that broke up your marriage will continue to haunt you…and they will be magnified by the divisions divorce creates. We figured we might as well stick it out with each other because had we chosen to walk away from our marriage, our personal shortcomings would still be there, staring back at us in the mirror. We both have a lot of personal growth still left to do but we’ve always agreed that it would be easier to do that growth side by side than it would be to do that work apart, with the complications of second marriages, stepchildren, and all that goes along with divorce.

    Our young family in 1992

    Our young family in 1992

  4. Find things to be passionate about together. From the Beatles and the arts to Alabama football, we have always looked for ways to share mutual enthusiasm. There are lots of things we enjoy separately and those things are important to us as individuals but there are some things that we invest our energy into equally. These shared interests give us something to focus on when our separate interests collide.
    He likes to fish. I like to shop.

    He likes to fish. I like to shop.

    And we are lucky that all of our shared passions clicked together when we created Merrimack Hall.

    With a few of our students in 2014

    With a few of our students in 2014

  5. Focus on the legacy that your marriage will leave. I imagine that all people who have long-term marriages have a commitment to leaving some sort of legacy – for their children or their religion or their profession or their community. Alan and I both know that separately, we can leave a mark and we both have. But together, we can make a more powerful statement. I bet every couple who’s been together long enough will say the same thing.

And the most powerful thing I know about being married is this:

7. “We” is more important than “me.” We have approached every challenge and every triumph from the mindset of “we.” There have been dozens of times when what was best for “we” might not have been what was best for either of us personally but we were committed to the notion that when we said, “I Do,” we were forging an alliance that was more important than either of us as individuals.

As I scrolled through photos to use for this post, I was struck by the fact that we all have pictures of ourselves and our lives at our best. I have hundreds of photos of Alan and me at moments of great personal achievement and of great happiness.

Meeting Sir Paul McCartney...definitely a high point

Meeting Sir Paul McCartney…definitely a high point

Receiving the Humanitarian Award in 2014

Receiving the Humanitarian Award in 2014

I wish I had photos that show the turmoil, heartbreak, anger, frustration, chaos and sadness that have marked our 30-year marriage because those would be the photos that really tell the story: when the bank balance is “zero;” when parents age and die; when children veer off course and we fear for their future happiness; when arguments escalate into low-blow name-calling; when business ventures fail; when we embarrass ourselves in public; when we make mistakes that the other predicted but we wouldn’t listen to their advice; when we vehemently disagree on matters of great importance; when we hurt each other…these are the photos I wish I had because they would be the ones that tell the story of staying married for 30 years.

I treasure the moments of heartache and hurt almost as much as I cherish the memories of happiness and joy because it was in those moments that seemed the most hopeless that we chose to remember that WE are more important than ME. And that’s why we’ve managed to stay married for 30 years.

So, Alan, love of my life and best friend forever, congratulations to us. If we’ve made it through everything life has thrown us so far, I’d say we’re golden for the next 30 years. And to borrow Chelsie’s phrase, Alan…you I love.

 

 

Marriage Equality…For Everyone?

Beth and Frank are deeply in love. They have been in a committed, exclusive relationship for nearly 20 years. They have a wide circle of friends and a wide variety of shared interests. They take pride in each other, encourage and support each other. Their extended families are connected. Their’s is a deep, complex, nuanced, long-term relationship that gives them both great satisfaction. Beth told me once that her greatest dream for her life is that someday, she and Frank can get married. But they can’t get married, nor can they live together outside of wedlock. Beth and Frank aren’t real but their story is true for dozens of couples I know. bill-and-shelley-wedding-photo When the Supreme Court made its historic ruling on same-sex marriage, I celebrated. But then I remembered all those couples I know who are still denied the opportunity to marry and decided the battle for marriage equality is not over yet. And it won’t be over until all the Beths and Franks that I know – and the millions of Americans like them – are afforded the same chance to marry that you and I are. The reason they can’t get married has nothing to do with love or religion or morality and everything to do with money.

Their relationships face the same derision and marginalization that same-sex unions have been subjected to for so long. Then, these relationships are further devalued and disrespected because should these couples decide to marry, they could be subjected to substantial financial penalties on the government benefits they receive – benefits they rely on to live as independently as possible.

As one woman said to me, “No one will let us get married because we’re special.” special-needs_539_332_c1 I’ve done some research to find out why the marriage penalty for people with disabilities even exists in the first place and, on paper, it makes sense: two married people who live together can save money on shared living expenses – rent, utilities, groceries; if those two people also happen to receive government benefits, then those benefits could be reduced because of the savings. In the case of people with intellectual or physical disabilities, each person could receive a 25% reduction in their benefits if they married. If they chose to live together outside of marriage, as soon as their living status was reported, their benefits would be cut.

We say that we want people with special needs to live as independently as possible, that we want to educate them in a “free and appropriate environment (FAPE)” and that we want them to live in the “least restrictive environment (LRE)” and yet we hamstring them at every turn. If they have jobs, they are restricted from earning more than a pittance or their benefits are jeopardized. If their families place money in their names to insure for their long-term care, their benefits can be reduced (unless the family has entrusted this task to a team of highly-skilled attorneys and accountants who set up a Special Needs Trust). If they live in a co-ed group home, they are forbidden from having relationships with the opposite sex out of fear that love might bloom, risking the benefits that pay for their housing.

Raising a child is an expensive proposition. Raising a child with special needs is exorbitantly expensive, even for families with deep pockets and the best insurance. Families rely on the assistance of a complex chain of entitlements and benefits that make it possible for their children to have the therapies, services and assistance they need to live full and rewarding lives. Explaining those benefits goes beyond the scope of this post – partly because I can’t begin to interpret them all and partly because they are so intertwined and include SSI, SSDI, Medicaid, Medicare, Welfare, Section 8, food stamps and others.

People with disabilities rely on some or all of these benefits but in order to retain them, we expect them to basically live in a state of poverty and restrict the amount of money they can earn, save or have in their name. This article from The Huffington Post includes resources and links, along with a simplified explanation of the benefits most at risk for the majority of people with disabilities, should they marry.

My purpose here is to raise awareness of the issue and to ask this question: Should people with special needs be allowed to marry, without any financial penalty?

Justice Kennedy, in writing the opinion for the majority, said of marriage that, “Its dynamic allows two people to find a life that could not be found alone, for a marriage becomes greater than just the two persons. Rising from the most basic human needs, marriage is essential to our most profound hopes and aspirations.” Justice Kennedy also wrote, “Marriage responds to the universal fear that a lonely person might call out only to find no one there. It offers the hope of companionship and understanding and assurance that while both still live there will be someone to care for the other.” couple-with-disability-wed-photo I believe that everyone who wants to be married should be afforded the right to fill that basic human need, to assuage the loneliness of living alone and to have the companionship of a partner, regardless of their IQ or physical limitations.

Granted, adults with special needs who want to get married may require additional support systems to insure their success. Most of the families that I know would be more than happy to provide those support systems to their loved ones…they just can’t afford to take the financial risk.

People may question how two people with special needs could actually live independently, in a state of marriage. A documentary, Monica and David, paints a lovely and realistic picture of marriage for two adults with Down syndrome. This touching film won numerous awards and I highly recommend it for anyone interested in the topic (it can be found here on Netflix).

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More information can be found on the Marriage Equality for People With Disabilities Facebook page. A petition is available on change.org to end the penalty that prevents people with disabilities from getting married. I signed it and I hope you will consider signing it too.

Society can debate about government subsidies and programs, healthcare expenses, the feasibility of people with special needs living independently and other details in abstract all day long. I can’t think of these things in the abstract because when I think of them, my mind immediately goes to all of the Beths and Franks that I know.

I think of adults who love each other and long to share their lives together in a legally recognized union.

I think of adults who deserve the dignity and respect that marriage would bring to their relationships.

I think of adults who deserve to have lives like the rest of us because the only difference between “them” and “us” is a few IQ points…or the way we move around…or the way we communicate.

They” are not people with disabilities…they are people, who experience the full range of human emotions that we all share.

Their” love is no less than our love.

And if #lovewins is true, then everyone’s love should win. 11722330_848694518546662_4909391832293084721_o

In Sickness and In Health

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I usually write about the people with special needs who are part of my arts education program or I write about being the mother of an addict in recovery. Today, I’m writing about a totally different topic…my marriage. I’m close to being an “expert” on the topic of marriage, as I’ve been married for over 28 years to the same man, who was my sweetheart for five years before we said, “I do.”

What prompted me to think about marriage is that I went to a wedding last weekend. The groom has been one of my daughter’s closest friends since they were in diapers and he is the first one of her close friends to tie the knot. He and his bride looked like Barbie and Ken, so gorgeous and happy. When the minister said, “Who gives this woman to be married to this man?” I thought, “He’s not a man…he’s a little boy who’s diapers I changed; a boy who was convinced he was Captain Hook for about two years; a boy who loved to eat Reece’s Pieces…very deliberately, one at a time…for hours.”

As I teared up, Alan put his arm around me. Maybe he thought I was thinking of our wedding day, of how quickly the years have gone by, of how incredible it is to realize that we’ve been together more than half of our lives. I was thinking these things but I was also thinking that I’ve taken for granted that I will always have Alan by my side and that we’re too old to take anything for granted anymore.

Debra and Alan first date

When I was 25 and again when I was 40, I had intestinal resection surgery to deal with my diagnosis of Crohn’s disease, a chronic and progressive disease of the intestines. Alan’s had to face the possibility of my death and he’s had to nurse me through everything from C-sections to back surgery. The worst health issue that Alan’s ever had was a torn ACL. Because I live with a chronic illness, I’ve obviously thought about the possibility of my death and have sometimes agonized over the thought that I might not be around to watch my children reach adulthood or to be a grandmother.

I’ve worried about what my children would do without me but never about Alan. He’s a man, after all, tough and capable. I’ve always figured that I’d go first and that he’d get married again or would spend the rest of his life remembering me with affection but would move on without much fanfare, remaining strong for our kids. I’ve never doubted his love and devotion but I guess I’ve always thought we were two individuals who decided to spend our lives together and who would eventually be okay when one of us was gone and the other had to return to life before those “I dos.” I’ve been oblivious to how old we’ve gotten and told myself that one of us dying…well, that won’t happen for years. Only we’re not so young anymore and Alan wouldn’t have been okay if something had happened to me. I know this now because the tables have turned and for the first time in the 32 years that I’ve known him, Alan is facing a health crisis.

It’s nothing he won’t recover from but it is something that involves a serious major surgery, scheduled for two weeks from now. It will involve a week in the hospital, then a 6-week recovery and it will involve a lot of pain and some alterations to his lifestyle. I know he will be fine, I’m grateful that a routine procedure discovered something that isn’t critical now but would have been a death sentence a year from now and I have no doubt that he will recover completely. But imagining, even for a minute, that I might lose him is something I wasn’t prepared to think about. No, if something had happened to me, Alan wouldn’t have been able to just move on and if he goes before me neither will I.

Debra and Alan at Conner Wedding

As the bride and groom pledged to be there for each other through sickness and health, I thought about the power of those vows we take. Two young people choose each other and then they stand in front of God and everyone they love and promise to hang in there, even when it gets hard. Those words we say to each other, when we are too young to really understand what they mean, are what bind us together through the years and the ups and the downs, through the joy and the tears and the loss. When people take those vows, they cease to me “you” and “me” and they become “we.” Alan and I have been a “we” for so long that I can’t even contemplate what it would mean to be “me” again…and I never want to find out.

Being married isn’t easy. Marriage requires a selfless resolve to remember those vows every day and to work through those things that make it difficult to live with the same person day in and day out. Marriage means that sometimes you may not get what you want and sometimes, you might not even get what you need. But it also means that if you stick with it, your relationship with each other will evolve into an intricate tapestry with threads of tragedy, sadness and pain woven together with threads of joy and contentment. If you stay the course, your marriage will become a union of you and me that cannot be put asunder because it’s woven together so tightly that it’s bonds are stronger than you could imagine when you were young and so in love. And when you’ve been married long enough, you will know that you are a different person, a better person because of your spouse and because of all the things you’ve shared in your life as husband and wife.

Because of this current health crisis, I realize that I cannot take being married for granted any longer because it won’t last forever…one of us will leave our marriage someday. The other one won’t be ready when that happens and the other one will never be the same. But at least whichever one of us is left behind will have a beautiful tapestry to wrap around our shoulders.

Debra and Alan with kids from NoAla