It’s here, folks! Click below to start listening to the extended, extra-special mega episode of the “Hear Me Roar” podcast, “Female Business Owners: The Benefits, Pitfalls and Struggles Women Face When Running Their Own Business”! The episode features the podcast’s very first guest, Angie Bonin, of Angelina Rose Photography! Kate had an amazing time chatting with Angie about […]
By: Katherine Itacy, Esq.
Dated: July 8, 2018
As I read journalist Ben Mattlin’s fantastic new book, In Sickness and in Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Interabled Romance, this past week, it made me think about my own interabled marriage.
Mattlin describes an “interabled couple” as one in which one partner has a disability and the other is able-bodied. And that’s exactly what Yvens and I have become (for better or for worse).
Throughout the book, Mattlin (a quadriplegic Harvard grad who has two biological children and a wife of over twenty-six years) describes his interviews with numerous other interabled couples. The couples include those with physical and/or mental disabilities; those both interabled and interracial; those in which the disability occurred before the relationship, as well as those in which it occurred afterwards; those with and without professional aides; and those with and without children.
A recurring theme throughout the book involved the additional strain/pressures that most of the couples felt from finding a balance between the assistance and care needed from the able-bodied partner, and the sense of independence, privacy and pride of the disabled partner. Several felt as if the struggles endured due to the reliance upon the able-bodied partner strengthened the bond between them, whereas others acknowledged that it created too much of a strain on their relationship and intimacy. It’s hard to feel sexy and wanted if your partner has been spoon-feeding you and changing your colostomy bag. Several said that it’s preferable to have a paid professional handle most of the daily care for the disabled person. Thing is – it’s costly and not something within every disabled person’s budget.
I, like most of the disabled persons described in the book, have progressive, degenerative disorders. While my second spinal surgery in late March should help slow down the progression of my tethered cord syndrome, and most of my diabetic complications have stabilized for the most part (for now), we have no idea what’s in store for me in the coming years. All I know is that there’s likely nowhere to go but downhill.
The more my health deteriorates, the more urgent it will become to decide as to whether Yvens can/will/should become my caregiver, or whether we can afford to hire professional help to assist me. As it is, Yvens is the only one of us working. While we were living together and he came home from work, he was left to perform practically all of the household duties and yard work. When I was too fatigued or in too much pain to get out of bed and cook, he made sure that I ate and checked my blood sugar regularly.
And while he did all of that willingly, without me asking for it and without complaining about it, I (like a few of the disabled persons featured in Mattlin’s book) feel extreme guilt over it all falling on my partner’s able-bodied shoulders. Regardless of how many times Yvens tells me that I have more important things to be concerned about than him carrying the load for the both of us, I can’t help it!
I’ve already lost a lot of my capabilities and sense of independence. And having previously been in a relationship in which I carried about 99% of the load of housework and financial duties (while working about 100+ hours per week), I hate placing that burden on Yvens; I know how it feels!
Mattlin’s book has certainly helped me to accept (as Yvens has repeatedly told me) that he’s helping to ease my burden and lighten my load because he loves me, and is more than willing to do it. It’s not simply out of a sense of duty or pity or feeling trapped, and it’s not building resentment towards me. Every couple has its own struggles, and in ours (as in so many others’ around the country), our major struggle concerns my disabilities.
What’s been really helpful and reassuring is that Mattlin notes how the disabled person in the relationship also brings his or her own benefits and strengths to the relationship, even if it’s not in the form of monetary gains or manual labor. We, as disabled persons, bring our own sense of emotional support, humor, encouragement, fiscal knowledge, parenting skills, love and friendship to the relationship and to our partners.
I know that it’s going to take me a while to come to terms with the fact that I can still positively contribute to the relationship, even if I’m no longer able to contribute around the house or yard, and despite the fact that I often need help from my husband in order to make it through the day. So while I continue to work through my feelings of guilt and shame and uselessness, my attention keeps redirecting to another issue at hand: children.
Now, my husband has an amazing, joy-filled seven-year old son, Eli, from a previous relationship. Eli lives with his mother in Orlando, while Yvens currently lives and works in Detroit. We try to see Eli at least 3-4 times per year, and in fact, we just spent the Fourth of July holiday week with him. But this was the first time that I saw him post-surgery, and the first time that I traveled by plane after the surgery. In one word, it was rough.
My husband is great about keeping an eye on my pain and energy levels, since I’ll often try to minimize it in order to still spend time with Eli and the rest of Yvens’ family. Unfortunately, even though Yvens made sure that we didn’t travel too much or visit with the family for too long, the pain and exhaustion hit me like a ton of bricks just a few days into the trip. In fact, I fell asleep while visiting with his parents, and even had to stay behind at the hotel towards the end of the trip.
This really killed me in terms of losing out on bonding opportunities and special moments with my stepson. I love playing his imaginary games with him and hearing his infectious giggle.
So what of Yvens and I having our “own” child? Since my disabilities make it impossible for me to safely bear a child naturally, we understand that we’d have to adopt in order to have a child.
The thing is, my physical limitations now scare me when it comes to raising a child. If I can’t hang with a seven-year old for more than a few days every few months, then how could I share child-rearing responsibilities full-time??
And yet. There are countless interabled couples that raise children (some of whom were conceived naturally; some through surrogacy, and some through adoption), and raise them well and with so much love. In fact, many of the couples in Ben Mattlin’s book have raised children together, including Mattlin and his wife.
Actually, at the end of the book, Mattlin includes a portion of an essay that his eldest daughter (now in her 20s) had to write a few years back for school. This is how she describes her experience being raised by interabled parents:
“The basic realities of having a physically disabled parent have affected who I am in meaningful ways and made me a more thoughtful and independent person.
I started to take responsibility for fulfilling my own needs at a young age. The point at which a child is no longer the one who needs the most help with basic tasks usually comes with the birth of a little sibling. For me, it came as soon as I was able to raise a spoon to my mouth more effectively than my quadriplegic father. This instilled in me the knowledge that often the most pressing need is not my own. It also taught me, however, the importance of asking for help when I need it. My dad has shown me that there is nothing wrong with asking for what you need, and his fight for reasonable accommodations often helps others who need the same things.” [FN1]
My stepson has already learned that his stepmom sleeps a lot, gets tired easily and is often in too much pain to get out of bed. While that makes me really sad that he’s had to learn that at such a young age, maybe he (and any adopted child we may have in the future) will use these experiences with a disabled stepparent to gain a greater sense of independence, as well as a better understanding of how to respect your physical limitations and ask for help when you need it.
Right now, I’m still recovering from my surgery and adjusting to my new quality of life, so adoption would have to wait for a while, anyway. And even if/when we did look into it, there’ll most likely be barriers that we’ll have to face as an interabled couple. As Mattlin notes in his book, despite the fact that the ADA makes discrimination against disabled prospective adoptive parents, it still happens. And when it comes to adopting from a foreign country, disabled persons sometimes face outright bans against adopting a child, with no legal avenue through which to challenge it.
Sadly, there are still a lot of ignorant (and inaccurate) assumptions out there that a disabled person, even if coupled with an able-bodied partner, wouldn’t be able to provide quality, loving, engaged parenting to any child. And maybe I’m contributing to that with my own assumptions; assumptions that I won’t be able to be a “good enough” parent to an adopted child.
Sure, as Yvens and I were recently discussing, no parent is perfect. Every parent makes mistakes along the way; every parent makes decisions regarding the rearing of their children that may not pan out to be the best decision in the long run. And every person seems to have hangups from their childhood days as to one or both parents. But as long as the parent(s) involved give their best efforts, and make decisions from a place of caring and love, that’s all we can ultimately as from them; these imperfect beings.
Maybe I’d make my child feel neglected because my medical needs would overshadow their need for attention. Or maybe their life experiences, their struggles would provide the child with a greater sense of independence and empathy towards others.
I know, without a shadow of any doubt, that I would love and care for any child of mine with all of my heart; just as I have with my stepson, as well as all of my “nieces” and “nephews” out there.
So who knows what’ll happen in the future. There’s a lot of education and acceptance that needs to happen on my part first. But I’m so thankful for Ben Mattlin, his recent book, as well as all of the inspiring interabled couples out there. I want to thank them all for their strength, as well as for their vulnerability in sharing their stories with the world in order for more acceptance and understanding towards these persons. Hopefully, it’ll continue to eradicate some of the stereotypes as to the abilities (or lack thereof) of those with physical and/or mental impairments or limitations.
Mattlin’s book has certainly opened up my eyes regarding these issues, and has certainly helped me feel less alone in my thoughts and guilt as a disabled person in an interabled relationship. I’m so lucky that I have a partner who helps me fight against those feelings of guilt and inability. I truly help that each differently-abled person in this world has at least one other person in their life that can provide that kind of support; especially in those moments when we disabled persons can’t support ourselves.
If you have any thoughts or insights on Ben Mattlin’s latest book, or on the issue of interabled couples/families, you can let me know by leaving a comment below, or reaching out to me via Facebook, Instagram, LinkedIn, Tumblr, Google+ or Twitter.
’Til next time, my friends!
[FN1] – Ben Mattlin, In Sickness and in Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Interabled Romance 232 (2018) (emphasis added).
Hi again, everyone! While half of our dynamic duo is still on her hiatus (during which time, she’ll be creating and starting her own online nutrition-based education/coaching system – Go, Nikki!), the other half, Kate, is here to give you our fifth podcast episode, “Self-Hate and Female Rivalry.” This podcast episode focuses on how we, […]
By: Katherine Itacy, Esq.
Dated: June 3, 2018
Ok, so I have been going around for quite some time, claiming to feel like I am an active mind and spirit trapped inside a diseased body.
I’ve made this claim, knowing full well that I could have it a lot worse: I could actually have become paralyzed; I could have completely lost my mobility and independence. I’ve tried to imagine what it would feel like if I had become paralyzed, and I’ve tried to empathize with others who are.
I’ve tried to adjust to my physical disabilities, and accept the fact that a large part of my identity is now that of “disabled person.”
I’ve struggled a lot with this over the last decade, and even more so over the last two and a half years. As a child and young adult, I always said: “I have diabetes. I’m not ‘a diabetic.’” I refused to let my health dictate who I am, and instead, have tried to identify myself in terms of my accomplishments. For years, my identity was that of a student-athlete; then, a criminal defense attorney and civil rights activist.
I refused to let my medical conditions dictate how I lived my life. Until they did. They took over my daily life, ended my identity as an active attorney and activist, and sentenced me to limited mobility and a reduced quality of life.
I’ve had to acquiesce to the fact that many days, my illnesses stop me from making plans or accomplishing certain things. Through it all, I’ve tried to keep a healthy perspective regarding my life, and how I continue to be fortunate in a lot of ways.
But I’ve never felt more grateful about my life, and more empathetic and impressed by another disabled person than when I heard the story of Jean-Dominique Baby.
The 44 year-old editor-in-chief of French Elle was going about his life one day, planning a weekend adventure with his 10 year-old son, when he suffered a major stroke.
Nearly three weeks later, Mr. Bauby woke up from a coma and learned that he was a quadriplegic, with the use of one ear and one eyelid. He was suffering from what’s referred to as “locked-in syndrome,” which is when the mind is aware and fully functioning, but the body makes it all but impossible to communicate with the outside world.
Through the assistance of medical professionals, Mr. Bauby was able to communicate by blinking his one useful eyelid. Anyone trying to communicate with the editor would have to read off letters in the alphabet, and watch as Mr. Bauby blinked to indicate which letter he wanted to use. This was done, over and over, letter by letter, until words and sentences were formed.
As impossible as it may seem to even hold a conversation this way, Mr. Bauby blinked approximately 200,000 times over the course of ten months in order to compose his memoir, “The Diving Bell and The Butterfly.” In it, Jean-Dominique Baby describes what it was like for him to actually be an active mind trapped inside his own body, with his mind and imagination being akin to a butterfly, trapped inside a diving bell.
To the best of my knowledge, the above image is an example of an open-bottomed “wet diving bell” from the 1700s, which was used to transport divers to and from the water’s surface. The divers could sit or stand in the bell, with their heads out of the water, in order to adjust to the difference in outside pressure to their ears.
According to Wikipedia, a closed diving bell is “a pressure vessel for human occupation” under water. It makes sense that Mr. Bauby would equate his experience to his mind and spirit being trapped inside a pressurized underwater vessel; I’ve often found myself making similar comparisons in my situation.
Jean-Dominique Bauby’s book (and life story) is simply incredible. He writes almost objectively about his condition, with no sense of whining or “woe-is-me” found within the pages.
And as inspiring and heartbreaking as his story is, it becomes even more devastating to learn that just two days after the book’s publication, Mr. Bauby passed away due to complications from pneumonia.
I know it does little-to-no good to compare your situation with others, because there will always be someone worse off than you, and always someone better off than you. But when you’re indulging in a little self-pity, it does help to read a story like Mr. Bauby’s, if only for a little life perspective.
How could you possibly wallow after hearing such an inspiring, yet tragic story?! Personally, I find such motivation from stories like Bauby’s. The human spirit is so resilient, even when the human body fails us.
From now on, if I ever find myself immersed in self-pity or anger towards my physical impairments, I will remind myself of Jean-Dominique Bauby, and the mental and spiritual strength he summoned during such unimaginable circumstances.
If you have any thoughts or comments regarding Mr. Bauby’s life story or his memoir, “The Diving Bell and The Butterfly,” you can let me know by leaving a comment below, or reaching out to me via Facebook, Instagram, LinkedIn, Tumblr, Google+ or Twitter.
’Til next time, my friends!
By: Katherine Itacy, Esq.
Dated: May 30, 2018
Hi, everyone! I’m back from my surgery, and thankfully, I still have a few of my wits about me!
While the recovery process is still ongoing, and the original pain has returned, I am so thankful that the neurosurgeon was able to remove most of the tumor and untether my spinal cord. Even if none of my other neurological deficits are alleviated, and the pain remains the same as before the surgery, at least the doctor and her team were able to prevent paralysis!
Lately, I’ve been thinking about those of us with chronic pain. It’s so hard to describe sometimes, and can be so wildly subjective to the individual. On a scale of 1 to 10, is my 7 a ‘real’ 7? Or is it someone else’s 10? Maybe someone’s 10 is another person’s 4. No one really knows, because you we’ve never been able to objectively quantify someone’s pain. But what if we could?
My husband has often told me that he would take the pain away from me and feel it himself if only I could be spared from it. In fact, he’s said he’d take away all of my medical conditions from me if he could. Obviously, it’s an incredibly sweet sentiment, but I’d never want him or anyone else to have my disabilities.
But that got me thinking….
The hubby and I also talk a lot about the criminal justice system, as well as the discrimination that persons of color frequently face in America. He’s obviously coming from the viewpoint of law enforcement, but also as a person of color and a legal immigrant into this country. I, of course, have my limited insights as a former criminal defense attorney and civil rights activist, as well as my experiences as the wife of a Haitian male and the step-mother of a Haitian-American male.
We talk about how frustrating it is when individuals offer opinions about the experiences of persons of color in the United States, when those individuals don’t even try to consider what it might be like for a black man or a Latina female, for instance. Being able to understand what another person is experiencing or feeling is the definition of empathy. Often, it’s impossible to fully understand, but we, as people, need to at least try. Otherwise, there’d be no compassion for our fellow human being.
So what if it were possible to put yourself in someone else’s shoes for a short time?
And no, I’m not talking about the plot of Freaky Friday. I’m talking about virtual reality.
With all those new VR goggles boasting lifelike experiences, I asked the hubby this past weekend: What if someone created a “Day in the Life” VR game to foster greater empathy towards others??
Maybe the user could experience what it’s like for the average black man to be pulled over several times in one day, just because he “fits the description” of a wanted suspect?
What if you could experience what it’s like to be in solitary confinement in prison, or on death row? How about being a day laborer in Southern California during the summertime? Or an undocumented person, traveling through the desert brush with a Coyote smuggler and a group of others trying to illegally enter the country?
How about experiencing, through VR, what it’s like for a police officer to canvass a dangerous neighborhood for an armed robber? Or a soldier on patrol?
What about trying, through VR, to make it through the day as a homeless teen on the streets of New York City? Or being a person in a wheelchair, trying to navigate yourself around a busy college campus? Or a single parent, working two jobs and trying to raise your children alone?
Now, I’m not suggesting that we create a VR game that would create pain or trauma for the user. But wouldn’t we, as a society, get along with each other better if we could better understand the struggles that so many of us endure in our lives? Don’t you think that Congress would benefit from a little more empathy before it proposed and voted on various laws?? That the average person might be a little less judgmental or self-absorbed if they better understood what others go through?
Of course, it’d be very unlikely that people with limited empathy would even want to try the VR game, but wouldn’t it be awesome if they did?
Who knows – maybe future generations could be required to play the game during high school, sort of like having to carry around a robotic baby for a few days to understand what it’d be like to be a teenage parent!
What do you think?? Could a game like this be helpful? Do you think it’d work? That the people with limited empathy would take such a game seriously? If so, what other experiences do you think it would help the user to be exposed to?
I’d love to know what you think!
Maybe I’ll even make it the subject of a future podcast episode! You can learn more about the podcast I co-host with my BFF Nikki by visiting the website here. You can also follow us via Twitter, Facebook, Google+, YouTube, or Tumblr. We always appreciate feedback!
‘Til next time!