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Ask Ada: Will I Ever Feel Normal Again, Post Illness?

Plus: how to recover from addiction while maintaining your privacy.

I Just Discontinued My Meds. What Now?

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

Dear Ada,

I have recently tapered off of the medication Zoloft which I was prescribed for anxiety. There were so many side effects to this medication, at the end of the day I felt like it was better to deal with my anxiety than take the medication. It has been a little over a month since I have stopped taking it. How long will it be before I feel like I am back to normal?

Regards,

Nervous Nellie

Hi Nellie,

Before I address your question, let me start with a disclaimer. I am assuming that you have gone off your meds in consultation with your physician, but if not, your first step should be to give them a call. No one should take themselves off a prescribed medication without consulting their doctor first.

With that out of the way, let me answer your question about when you will start feeling ‘normal’ again.

There is no normal. I wish I could tell you that you’ll feel better in three weeks, and that is that, but I can’t. What feels normal to me may feel like euphoria or hell to you.

I’m guessing that what you mean by “normal” is that you simply want to feel like yourself again. Many depression and anxiety medications are known to cause either insomnia or vivid dreams, decrease sexual desire, or just generally make you feel “different”. If these issues were a concern for you while taking the medication, then know that most people return to their baseline after being off the medicine for a short time.

Many depression and anxiety medications are known to cause either insomnia or vivid dreams, decrease sexual desire, or just generally make you feel “different”.

But there’s something else I want to talk about — antidepressant discontinuation syndrome.

I’m so happy to hear that you took the time to taper off of the medication, instead of stopping cold turkey, which could be dangerous to your mental and physical health. However, even with a physician-monitored tapering schedule, some people experience discontinuation symptoms, which can mimic the feelings of anxiety and depression (among other physical symptoms, such as dizziness, digestive problems, sleep issues, and restless legs).

If you’re feeling any of these symptoms, know that they will pass. It doesn’t necessarily mean you’re experiencing a relapse, even if it may feel like it.

Harvard Health Publishing reports that “Discontinuation symptoms emerge within days to weeks of stopping the medication or lowering the dose, whereas relapse symptoms develop later and more gradually.”

To determine if it’s a relapse of discontinuation symptoms, your doctor may suggest taking a low dose of the medication again. If symptoms disappear quickly, it’s a side effect from stopping the medication.

Either way, it’s important you stay in communication with your physician and report these symptoms to them, so they can help you get back to a place in which you feel comfortable without medication again.

And I don’t want you to feel like you have no control in this transition, either. There’s a lot you can do to help yourself get back to that normal. At this point, it’s important to stay in therapy and reach out to your support system. Getting physical might make you feel better quicker. Exercise

The same Harvard article says, “Exercise makes serotonin more available for binding to receptor sites on nerve cells, so it can compensate for changes in serotonin levels as you taper off SRIs and other medications that target the serotonin system.”

So take care of yourself, Nellie. Be patient with the changes in your body, move your body to help heal your mind, and trust that you’ll find your new “normal” soon.

P.S. Fellow readers — remember that no med changes should ever be done outside the care and supervision of your physician.

How Do I Stay Sober While Maintaining My Privacy?

Dear Ada,

It’s the “warm” celebration season, meaning wedding and baby showers, graduation and pool parties, and weddings will be taking over my weekends. I actually love happy life moments, and spending time with friends and family is exactly what I want to be doing. Here’s the problem. I’m newly sober. How do I explain why I’m not drinking to my family, friends, and colleagues during this celebration season in a way that is direct enough to get them to stop badgering me to drink with them, while still keeping a bit of privacy so I don’t have to wear a shirt that says “Alcoholic in Recovery” to the event. I mean, you’d think everyone already knows that I’m in recovery, right. Well, not true. I’m someone who’d be called a (recovering) “functional alcoholic.” I woke up every morning, went to work, came home, and drank in an unhealthy way, but no one was here to see that. I’m working so hard at this, and I’d love to keep my recovery private. Please help.

Dear Lady in Recovery

Hi Lady,

Congratulations on your recovery! Every single day is a victory, and I’m so happy to hear you’re thinking ahead to plan for how you’ll handle future stressful situations. However, you’re going to need to figure out how you’ll handle this situation in both the short- and long-term.

In the short term, there are many ways to deflect a drink. One of the easiest is to tell the person asking that you can’t drink because you’re driving. Everyone wants a sober driver, right? Another good excuse is to blame the abstinence on a future event, such as going to church after the event, babysitting your niece that evening, or having a busy work day in the morning. Or, combine them all! “Sorry, I can’t drink today. I’m babysitting my niece after church and tomorrow I have a super busy day at work!”

Those are the most honest ways to deflect a drink, but keep in mind that you can fudge the truth a little if someone is really persisting. For example, tell them you just finished a drink. You don’t need to specify that the drink you just finished was just soda.

Remember how I mentioned that you’ll need a long-term strategy? Well, that’s because small excuses won’t work your entire life. Eventually, people are going to catch on that you’ve stopped drinking, and might ask why directly. Or, you might just get sick and tired of repeating these same deflections, and you’ll want them to stop asking for good.

Taking responsibility for your abstinence is a huge step forward in your recovery.

Plus, and maybe the most important part, taking responsibility for your abstinence is a huge step forward in your recovery.

Respond to drink requests by saying, “No, thank you. I don’t drink.”

The sentence is simple, direct, and doesn’t leave room for additional conversation. You most likely won’t get any more questions from acquaintances, but your closest friends and family members may persist. If they ask why, remember that you have every right to protect your personal information while still answering truthfully. You can say, “Yeah, I stopped drinking. I didn’t like how it made me feel.” Period. End of story. If anyone asks, “Are you an alcoholic?” you decide how you want to respond. Some people will feel comfortable saying yes. If that’s not you, know this is fine too. Just reiterate that you were tired of not feeling healthy while drinking, and your decision is final.

But it’s not just how you handle these conversations that are important, it’s how you process the events yourself. Being newly in recovery, these parties will be difficult for you to process. Champagne toasts, open bars, and celebratory shots are all triggers. Now is a great time to build a support system and lean on them if necessary. If you’re in AA attend additional meetings.

If not, schedule more therapy sessions. If it’s too soon to attend, don’t hesitate to RSVP that you won’t be attending. Finally, if you choose to attend, stay clear of the bar, keep yourself busy, and lean on friends who know about your sobriety.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Uncategorized

Paintings Everyone Can See, From An Artist Who Can’t

When Japanese-Mexican artist Shino Watabe lost her sight, she thought her career was over. But then she realized there were other ways to see.

Most museums have a strict rule: Stand back from the paintings.

But a new Mexico City exposition entitled ‘Journey of Dreams’ challenges viewers to do just the opposite.

The exposition by Japanese-Mexican artist Shino Watabe, which will be held this weekend April 6th and 7th, invites visitors to explore a series of paintings with their senses alone, coming to know trees, plants, bicycles and other objects through the raised texture of the bold-colored works.

“We impose limits on our own selves,” says Watabe. “If we get rid of limits on ourselves, (unexpected things) can become reality.”

Watabe’s objective is twofold: To allow visitors to experience what it’s like not to see, and to enable them to develop their sensory capabilities.

Watabe’s objective is twofold: To allow visitors to experience what it’s like not to see, and to enable them to develop their sensory capabilities. Some paintings are infused with mandarin peel and flower aromas, and visitors have the option of using a blindfold as they make their way around the roughly 50-piece collection.

But while the exposition helps reimagine the interaction between onlookers and art, its provenance also comes from a more personal experience: Watabe’s own struggles going nearly blind.

Attracted by Mexico’s muralist tradition, the now 49-year-old artist left Tokyo when she was 17 and began studying oil painting at the National Autonomous University of Mexico’s school of plastic arts.

Years later, however, she lost her vision “from one day to the next.”

“I had no knowledge about disabilities,” she recalled. “I was paralyzed by shock.”

A painting by Shino Watabe of a dachshund in a bicycle basket.
By using raised patches of paint and imbuing her paintings with smell, Shiro Watabe’s art can be ‘seen’ with multiple senses.

Around 2008, Watabe was interned at various hospitals, received a misdiagnosis, and underwent an unsuccessful operation before later finding out her lack of sight was the result of optic nerve atrophy, which is the degeneration of the cluster of nerves that carry information from the eye to the brain. A neurologist also revealed a hard truth: The condition has no effective treatment.

“I couldn’t even go to the corner store near my house, or take out the trash when the garbage truck came,” she recalls. “I said, ‘how do I survive?'”

Beset by anger and “total denial,” she also refused to use a walking stick and constantly crashed into objects around her.

“I said, ‘Someday I will see again, I have no disability,'” she said.

Physically, she “fell and fell and fell.” Emotionally, a deep depression took hold.

It was around that time, however, that two separate events inspired her to accept the circumstances and become a source of inspiration for others.

First, she returned to painting. Beginning with relatively simple crafts, she discovered she was still capable of making art by relying on the use of textures: One of her first projects, for example, involved flowers made out of paper, which she then glued to wood and painted over.

“I do not want to call it therapy, but it was a therapy,” Watabe said, adding that she is still able to distinguish primary colors. “I think art was a key to being able to get all that out.”

A painting of two fruits by Shino Watabe.
One of Watabe’s paintings painted after the loss of her sight.

During her first exhibition after she lost sight, she also sold two works.

“I said, `I think this is a message from destiny because I had already left painting behind,'” she noted, saying that for many years prior she had been working in an office to make ends meet.

Then, as Watabe began to navigate the world of the blind, another moment gave her hope. She was invited to participate in a bike ride held by the Mexican nonprofit Journey for the Blind, which takes people with disabilities on bike rides through the capital.

“When they invited me I said, `No, no there’s no way. How am I going to bike ride?'”

When she eventually mounted a bike and felt the fresh air though, she knew she was not dreaming.

“All the things that I thought were impossible, are highly possible, even bike riding,” she said. “That was when my life changed a lot. I said to myself, `the people who can’t see do so much,’ and I can see still see some things and I’m killing myself over this.”

It was that revelation that gave Watabe inspiration for her current exhibit, `Journey of Dreams.’

A friendly Mexican man with his arm around a blind Mexican-Japanese woman with sunglasses pushed up to her forehead.
“Disability is not a barrier,” says Shino Watabe, right.

After the artist found out the nonprofit was in financial straits, she volunteered to paint works and donate funds from the works, which often depict improbable scenarios such as a dinosaur on a bicycle.

“Within art, even a dinosaur can ride a bike,” she said, noting that her own life experience wasn’t too different.

The message, Watabe says, is that disability is not a barrier.

Watabe says that disability is not a barrier. “I think it’s an engine that makes us stronger.”

“I think it’s the opposite,” she said. “I think it’s an engine that makes us stronger.”

“We can become disabled at any time, like I did, so (this exhibit) is to help society become more sensitive not only toward disabilities, but also with diseases, syndromes,” she said.

“I think art is a tool to unite us and help us think about another person, not only me, me, me.”

‘Journey of Dreams’ will be on display at the Japanese-Mexican Association in Mexico City on April 6 to 7th.

Disability Q&As Uncategorized

MS Through A Photographer’s Eyes

Hannah Laycock's vivid photography shows life from the perspective of someone with multiple sclerosis.

Hannah Laycock was diagnosed with relapsing remitting multiple sclerosis in 2013. As a photographer, Laycock has started to explore what it means to live with a degenerative disease through her art. Her photo series, Awakenings, explores her journey through diagnosis to find a new normal in a changing body. contemplative and sensuous work on MS contributes to contemporary photography, and to wider illness narratives. She’s exhibited worldwide, and her latest photo series, The Vessel, was recently commissioned by Fòcas Scotland.

Contemplative and sensuous, Hannah’s work not only is making an impact in the world of contemporary photography, but in the wider narratives of illness and what it means to be normal. She’s exhibited worldwide, and her latest photo series, The Vessel, was recently commissioned by Fòcas Scotland. Folks sent Amy Mackelden, a writer living with the same condition, to talk with Hannah about how her diagnosis has changed her, how she incorporates the condition into her art, and what she hopes to accomplish next.

When were you diagnosed with relapsing remitting multiple sclerosis, and how did it change you?

I was officially diagnosed with MS in July 2013. I’d recently started to play squash again, which I hadn’t since I was about 16 years old. After the first session, I noticed a pain underneath my right shoulder blade, which progressed into numbness across my chest and down my right side. It was something I had never experienced before.

My doctor did some preliminary blood tests, but couldn’t find anything. I discussed my family medical history, my main concern being that my dad has Motor Neurone Disease (ALS). I was referred  to neurology to have an MRI scan.

I wasn’t expecting the news—that I had multiple sclerosis. Because my symptoms had faded and it was my “first” attack, they couldn’t quite make the diagnosis official until I had another relapse. In July 2013, the news was confirmed and I was then offered drug treatments. The whole experience felt like a dream; as if I was in someone else’s body.

An artistic photograh of a nude woman standing with her back to the camera with a cut down her spine.

Nervous System by Hannah Laycock.

I wasn’t expecting the news—that I had multiple sclerosis.

What was your career like before you were diagnosed?

After creating a project about my dad’s Motor Neurone Disease for my final year project at Brighton University, I felt creatively and emotionally jaded. Most of my energy went into my day job working as a Studio Manager and Production Assistant for a fast-paced creative digital agency. Although I enjoyed where I worked, it was stressful.

Why did you decide to start using your body in your photographs?

The fact that I use my own body in a lot of my work, almost like a performance piece, I don’t recall it being a conscious decision. It was more of an intuitive process. I was organically drawn to use this method as a way of translating how I felt, and still feel, living with a chronic condition.

It felt like a natural thing to do, being that I work with the experience of MS and how this affects my feelings and emotions. I feel at ease translating that through the use of my body. MS symptoms make me acutely aware of my body and what it feels, or in some cases, what I no longer feel.

It also gives me a sense of liberation, being playful with my body. Instead of MS choreographing what my body does, I work with it, rather than going against it and letting it consume me. In this way, the work makes me feel free and unrestrained.

Instead of MS choreographing what my body does, I work with it, rather than going against it and letting it consume me.

How do you come up with your ideas?

Ideas come from various sources, such as a passage from a book I’ve read, poetry, or the work of other artists. Ideas can come from something that appears quite mundane or simple. When I’m not trying to think up an idea, that can be when it strikes.

A woman standing in the forest with a cloud of smoke hanging before her face.

Brainfog by Hannah Laycock.

Your photos are often raw, exposed, and extremely intimate. Are you ever nervous about this approach?

I think with anything, it’s always healthy to feel some nerves. However, when executing raw and intimate subject matter, you need to have a healthy balance of assertion with exposing yourself in conjunction with those nerves. After all, if you are going to expose yourself, then you need to be sure of what and how you feel and why you are doing it. Otherwise, the work can come across as insincere and, perhaps, a little naive.

People do find some of the imagery quite intense, but I don’t see that as a negative. To me it means the work is translating what I had intended; it lays bare the reality of emotions people can experience with MS.

What does your MS medication mean to you? How does it affect you?

I was very much against medication for the first two and a half years after my diagnosis. I’ve never really been someone that felt the need to rely on medication.

If you are going to expose yourself, then you need to be sure of what and how you feel and why you are doing it. Otherwise, the work can come across as insincere

Prior to MS, I had been a healthy young woman from healthy stock. But before commencing treatment, I had experienced some pretty major changes in my life, such as relocating back to Scotland after living in Brighton and London (in the south of England) for 10 years. My body took the brunt of all the changes. My health deteriorated and I relapsed pretty badly. I lost the hearing in my left ear; my balance was way off. I had vertigo and had to use a walking stick and stop driving. I was majorly fatigued and felt like I was sinking fast into ill health. It was at that point that I decided medication was the only way forward to help me climb out of what felt like a bottomless pit of decent.

Two and half years later, I’m still on the same medication. An IV infusion every four weeks, which means I have to go to hospital each month. But since then, I’ve been relapse free. I still deal with daily MS symptoms, but they have become my “norm” and I am able to manage most of them. Others, I’ve had to have medical procedures to get a handle on.

In the grand scheme of things, I now live well. I have a sense of being back in control of my life. The only part I feel conflicted with is the fact that I have to go to hospital each month to have my dose of medication. This makes me feel a little locked in at times, and not as free as I would like, to just spontaneously disappear on a trip somewhere.

A woman with her face underwater in a bathtub, bleeding from her mouth into the water.

Forced to Gasp by Hannah Laycock.

Do you work in any other mediums aside from photography?

Not to the same extent as photography. Sometimes I dabble with a bit of drawing. I have also taken up embroidery for the first time this year. The plan is to incorporate that into new work that looks at the fragility of the human body from the perspective of disease. It will be quite a lengthy process; an installation piece working with textures and color. Color tends to play a big part in my work and is how I communicate what I’m experiencing.

What do you hope viewers take away from your photographs?

Curiosity to find out more about MS and other chronic conditions. A sense of confidence and empowerment within their own lives. To help others through times of adversity.

My next project, The Vessel, is about the experiences of relationships and intimacy through the lens of disease and diagnosis. I was once a person of a loved one diagnosed (when my dad found out he had Motor Neurone Disease), and then I became a person diagnosed myself (MS).

Don’t wait until you’re diagnosed with a serious illness to make you really appreciate all the things in life that bring you joy.

If you could let the world know just one thing about life with MS, what would it be?

We don’t get many chances in life, if at all. Don’t wait until you’re diagnosed with a serious illness to make you really appreciate all the things in life that bring you joy. Pay attention to the little things. Start appreciating everything now.

Hannah was interviewed by Amy Mackelden, who also has relapsing remitting multiple sclerosis. Amy is the weekend editor at Harper’s BAZAAR, and is developing a project about chronic illness called MS Is My Boyfriend.

Roundups Uncategorized

Community Roundup: What’s Your Favorite Thing About The Disability Community?

There’s this concept of ‘chosen family’ that refers to people you surround yourself with who support you. It’s a big concept in the LGBTQ community, where many people feel isolated from their biological families, but chosen family is equally important to the disabled and chronic illness communities for the same reason. This week, we asked […]

There’s this concept of ‘chosen family’ that refers to people you surround yourself with who support you. It’s a big concept in the LGBTQ community, where many people feel isolated from their biological families, but chosen family is equally important to the disabled and chronic illness communities for the same reason.

This week, we asked members of Folks’ Twitter community what their favorite thing about the chronic illness and disability community was. What many of the answers we received touched on was this concept of ‘chosen family’ and how much online communities can help support someone who is dealing with a life-changing illness or condition.

Also, this week we’re asking our followers: “What’s something you never thought you could accomplish when you were diagnosed, but which you successfully do now?” We’d love to hear your thoughts, so follow Folks on Twitter (@folksstories) and let us know! We’ll post our best answers next week.

Additional reporting by Josh Andrew.

Creative Commons photo by Lindsey Turner.

Genetic & Congenital Diseases Profiles Uncategorized

This Pale African Beauty Is Challenging The Stigma Of Albinism

In Nairobi, where albinos are persecuted and even killed for witchcraft, a 19-year-old model with albinism competes to be Kenya Miss Universe.

There’s one thing 19-year-old Lucianah Nyawira can’t understand about Kenyan society: why her fellow citizens seem to prize white people, yet she is so stigmatized.

The beautiful young woman with albinism, who is an aspiring model in talks with a top model agency to head to Paris, has been subject to abuse for most of her life.

“I don’t get why Kenyans always like white people so much…[white people] are always given privileges, everyone wants to be associated with you, why don’t they want to be associated with me and I’m white too? That is the irony in all of this.”

With her unusual loveliness, Nyawira is a natural beauty contestant in Kenya.

But the university student, who is now in her third year, has some insight; after all it’s a question she’s been grappling with for two decades, starting when her father kicked her and her mother out of the house just after she was born.

“When I was born my mum was newly married and my dad was a tour guide, so most of the time he wasn’t home. I was born, I’m white and both of them are black and he doesn’t know about this albinism thing so my dad was like ‘You cheated on me with a white guy’, and he chased her away.”

They moved in her with her grandmother, in the rural county of Kirinyaga in central Kenya, where things scarcely improved.

“People were coming, older people and all, telling the family I’m a curse to the village and to the family. It was really tough but I really love my mum because she’s a strong woman, and my grandmother – they never listened to all of that.”

Nyawira applies her make-up in her dorms.

For the duration of her life, Nyawira has had to listen to myths of how people with albinism are a curse, referred to as ‘zeru zeru’ – which means ‘white ghost’ in Kiswahili. She is also often called ‘pesa’, a Kiswahili word for ‘money’, and threatened with kidnap to neighboring Tanzania. In East Africa, where albino body parts are used by witch doctors touting medicine produced from them as a tonic for good fortune, a complete set of body parts can fetch as much as $75,000, according to the International Federation of the Red Cross.

“People will always call me funny names. Some will even see you walking with your friend and they pull your friend aside.”

A few years ago, Nyawira’s friend was warned she was inviting a bad omen into her life.

“My friend took it in and we don’t talk anymore.

“I used to cry every day when I was young. Most of the mothers never wanted me to play with their kids.”

On the catwalk.

But Nyawira, who credits a supportive family including her two half-sisters and step-dad with much of her confidence, has let very little come between her and her dreams.

She fits in studying diplomatic relations at Nairobi University around modeling shoots and a social media campaign to raise awareness about what it means to have albinism – educating people on facts like how albinism is not contagious.

“I want to be a diplomat, I want to make it in my modeling life, I want to be a good mum, I want to start my clothing line. I have so much stuff to do.”

She is currently negotiating with eminent international modeling agency Elite, which has represented models like Naomi Campbell and Gisele Bundchen, to go to Paris in July. Nyawira says the ‘albinism’ label is a difficult one; she embraces her genetic condition, a mutation of several genes which causes a lack of pigmentation, but she says that is just one part of her.

“Of course I can’t run away from being defined by having albinism. You can define me as a person with albinism but don’t treat me any differently because I have albinism. Yes, I have albinism, but don’t favor me. Yes, I have albinism, but don’t discriminate against me.”

Nyawira prepares with fellow contestants of Kenya’s first albino beauty pageant.

Though she concedes it has not been easy to forge ahead in the notoriously brutal world of high fashion, where appearances triumph above all else – even before issues of culture, race and health come into play.

“Most of the times when it’s African attire, the designer is like yes Lucianah you’re good, you have a beautiful body and you can do well but this is an African outfit, people will say we are not embracing the African heritage. People will say ‘Why are you giving the white people our African clothes?’.”

Nyawira was told by judges to leave one model casting call, while another time there was a critical public response to one of her photo shoots, which now number more than 20 across five different Kenyan publications.

“People were saying: ‘Why are you dressing a white girl in African attire? That is still colonisation. I really felt bad. Sometimes I just feel like maybe I should just finish college and go out country to the US, maybe this is where I can feel comfortable. But then I’m like ‘No, this is my country’ but it’s a very big population, how do I explain to people I’m not white? How do I convince African designers I can do African whatever?”

How do I explain to people I’m not white? How do I convince African designers I can do African whatever?

Apart from the limitations she encounters from other people, however, Nyawira says she faces few others due to her condition. Like others with albinism she has to be vigilant about wearing sunscreen and her vision is poor; she wears glasses much of the time and must sit in the front of her lecture theaters. But it poses no real interference with her modeling, apart from needing the intensity of the camera flash dialed down.

And she is hopeful that things will improve for those with albinism in East Africa. Nyawira says about half the time people accept she has albinism while the rest of the time people mistake her for a ‘mzungu’, the Kiswahili word for white person – but in her childhood very little was known about her condition. Kenya now has its first high court judge with albinism and a Member of Parliament with albinism, some of the trailblazers who are putting the cause of albinism on the map. Just recently, Nyawira competed in the world’s first beauty pageant for people with albinism and finished in the top 16 finalists of the Kenya Miss Universe pageant.

There is another potential social challenge Nyawira faces. While other barriers are breaking down in Kenya, women with albinism face great difficulties getting married. However, the defiant and articulate teenager doesn’t see this as a problem right now.

Women with albinism confront significant challenges in African society.

“Basically I don’t like men. In Africa, when you get married, you’re your husband’s property. The way your husband rates his house, his car, his farm, you’re among that. You’re the one to clean, cook – the role of the woman is to give birth, wash, cook and satisfy the man. I really don’t like the African thing about marriage, that is the only part I don’t like about being African.”

Never defined by convention, Nyawira still wants her own children, and has even decided on how many: three girls and one boy.

“I want to be a mother, of course. I love kids, I can be a mother even without getting married. I want to adopt a kid with albinism.”