“I can’t do it anymore,” he said, before doing chores and walking out on our marriage. Wait a minute, I thought, who takes out the garbage minutes after declaring their marriage over?
After eight and a half years together, a little under four of them as a married couple, my husband decided that he no longer wanted a wife with a disability. Having a partner with a disability is challenging; I get that. I am still the same person at my core, but the disease has changed my ability to walk and slowed my speech.
I admit that I fell for the “in sickness and in health” vow we spoke at our wedding. The reality is more complicated. Disabled people are more than likely to go through a divorce than nondisabled people in the general population. Men are more likely to leave their ill partners, a greater than sixfold increase when the ill spouse is a woman.
(Some divorces in our community come out of “necessity” — something that our government should be ashamed of — when staying together means health benefits and financial assistance are not accessible, and that is worthy of its own focus.)
Learning that my situation was not unique was an odd comfort, but I dug and dug through the depths of the internet to find public acknowledgment of others in my predicament. I could not find any. While blogs and forums touched on the subject, often from the point of view of the nondisabled partner, media outlets appear to haven’t touched it. It added insult to my injury.
More often than not, it is the heroic tales of a spouse standing by the side of a newly ill or disabled partner that make the headlines. Just recently, “The Ellen DeGeneres Show” presented the story of the former professional football plater player Eric Stevens, who recently discovered he has A.L.S., and his wife. Their story was heartwarming. On social media, others with similar diseases praise their partners for supporting them. I can’t blame them. Challenges like these bring out the best (and worst) in our loved ones.
For a long time, I viewed my ex-husband as my savior. The self-imposed guilt of becoming disabled consumed me; I was embarrassed. I found this feeling in abundance in others I have met in support groups. Even though the illness was no one’s fault, I allowed the all-consuming guilt to make me a shadow of my former self.
I’d nodded my head in fierce agreement when a stranger on vacation called him a “real man” for being with me. Over and over, I’d watched as people gave him the “good for you” nod; the disabled are familiar with the gesture.
I fully believed that this wasn’t what partners sign up for — an ableist narrative that is dangerous to those of us who become ill. But my partner knew I was ill when we married; I was already showing signs when we said, “I do.” Before the wedding, doctors told us what could happen with a degenerative neurological disease — we’d been to the Mayo Clinic, Johns Hopkins, NewYork-Presbyterian and others. He vowed to stand by my side no matter what happened physically (so long as I remained cognitively present and myself).
Yet, I saw the end coming.
We had always held hope for a cure. But once I received the 1-in-10-million diagnosis of primary lateral sclerosis, a much less fatal version of Lou Gehrig’s disease, our relationship changed. Two months before he left, I asked him if he was unhappy and if he wanted to separate. He assured me that he was with me “110 percent” but said our situation was weighing on us. We agreed to find a therapist, so I reached out to a support group for recommendations.
Therapy never happened.
In that time, he told me he had developed feelings for someone else — there was life he was missing out on.
I grieved the end of my partnership the first night. When morning came, I was immediately thrust into the battle for survival that someone with a disability must face head-on when a separation occurs.
The big items: We lived in the accessible condo that he owned. I had long taken having a walk-in shower, in-unit laundry and so many other luxuries, for granted. Where and how would I live? How would I get to and from medical appointments? Who would help me make phone calls? How would I do the simple things, such as taking out the trash and recycling? It was overwhelming. I sprang into action as quickly as my body would let me.
He initially asked me to move out of the home we’d shared for nearly seven years within a week. (While he later said I could take my time, the damage had been done.) Finding a place to live while on a budget is hard no matter what.
Now, add on a list of items you need for survival. I found that many buildings with affordable units were not accessible. After renting for a year and much help from an excellent real estate professional, I found an accessible condo in my price range near accessible public transportation in Washington.
But accessibility and location come at a price that many in our community cannot afford. Many disabled Americans struggle to survive on benefits the government provides. And the unemployment rate for us sits at 6.9 percent — just under double the general unemployment rate — and many of our community who have a job are underemployed or underpaid. Even those with a disability who are employed earned a median of $22,274 in 2017 according to the American Community Survey — less than 70 percent of the median earnings for the nondisabled. The national average fair market rent for a one-bedroom home is $970 per month and $1,194 for a two-bedroom home, nowhere near affordable for the average disabled person.
I also had to invest in a new mode of primary transportation, a mobility scooter. Turns out that most insurances do not cover a mobility aid if the person cannot demonstrate that it is needed in the home for at least two hours per day. I don’t need it in my home but for distances, so out of pocket it came.
I’m one of the lucky ones. I have an employer who values diversity and places a premium on what each of us can contribute. They have worked with me to make accommodations as my abilities have changed. Thanks to them, I’m someone who can afford these “luxuries.”
Even so, in the immediate aftermath, I found it tough to make ends meet. Though we had a prenuptial agreement, he refused to provide documents needed to satisfy its requirements. Then came the lawyers and the legal fees. The national average cost of divorce is $15,500 — most disabled people receive less from Social Security Disability Insurance per year and struggle to survive on that amount. When faced with buying lifesaving medications or fighting a spouse, the choice is clear.
I was lucky to be able to pinch pennies and protect my interests with the help of an attorney. After a year and a half, the divorce was finalized in September.
For 21 years, I’d never been single for more than three months at a time. I’ve now learned to be alone after the past year and a half, and I’ve found peace. I’ve forgiven my body for the illness and have come to love myself as I am. And with that acceptance, I’ve once again embarked on the path to finding a partner. Dating after divorce is tough enough, but now I’m putting myself out there with a disability.
Some have questioned my choice. Why not move in with my family 1,500 miles away? Or a facility where I could receive care? I don’t require aid to perform daily tasks or help at home; it just takes me twice as long. There may come a time when I may need additional help, but as long as I can safely remain independent, I will. This city has been my home for 14 years, and divorce will not tear that away from me — disabled or not.