Let me say it again

This or a similar statement with the same sentiment has been said before. In fact, many times by many different people. But let me say it again.

People with “low-functioning” Autism are more capable than you think. People with “high-functioning” Autism have more struggles than you think.

I hate saying “high-functioning” and “low-functioning” because Autism is a spectrum, not a scale. The difference between one person with Autism is more similar to the different shades of a color rather than the difference between black and white. I know it’s hard not to see things in black and white terms. Trust me, I know far too well. But I am learning, as we all must learn, that gray exists. In order to understand ourselves and others, we must seek to broaden our ideas of what it means to be uniquely human. 

Yesterday, I was at an appointment and one of the first questions asked was who diagnosed me with ASD. My answer to that is usually New York Presbyterian or more vaguely a neuropsychologist. So, I said NYP. He then turned from me and started asking my mom a series of questions.

 “Did she not talk on time?”

“No. She spoke on time.”

 “What about walking?”

“She walked on time. She did everything on time… She was pretty much the perfect child before she went off to college.”

The psychiatrist seemed somewhat baffled that ASD had been a suspected diagnosis let alone an actual one. I didn’t “look” Autistic. I walked on time. I spoke on time. Apparently, all people with Autism do not do that.

“Well, you must be high-functioning because you work a job and you go to school,” he said.

Because obviously “low-functioning” people with Autism do not work or go to school or God forbid do both. 

I’ll say it once more. 

People with “low-functioning” Autism are more capable than you think. People with “high-functioning” Autism have more struggles than you think.

Don’t get me wrong, I understand that I am “high-functioning”; though I rather say that my spectrum has more lows than highs in terms of difficulties and challenges. I understand that people whose spectrum has more highs than lows face obstacles that I will never know or understand. I understand that I should be grateful for not being largely impacted by Autism; and I am. But that doesn’t mean that I don’t have my struggles.

I have this thing where I say that everything is fine. Nothing bad has ever happened to me. I had a great, normal childhood in which I was afforded opportunities that some never will have. Everything is okay, I just have a few issues but so does everyone. I’m not disabled or anything. It’s not a big deal. I don’t deserve special treatment or extra help or anything like that. I am just your average person with a few quirks. Nothing is wrong or abnormal; everything is just fine. 

And that’s a good and bad philosophy to have. I never want to feel different or less than. I mean I can have low self-esteem and low self-worth, but nobody better dare see me as different or less than. I want to just be your normal 21-year-old. But I am not, and who is. No one is a stereotype. While avoiding feeling different or less by denying my struggles, I make myself different and less than. I say that my challenges are different and less than, unworthy of acknowledgement. 

You want to know what my first memory is? It happened when I was around three or four years old; and I didn’t feel well. But I didn’t know how to express that. I know that most three or four year olds can’t tell their parents that they have pain in the lower right quadrant of their abdomen. But tummy hurt, head hurt, or don’t feel good seems to be appropriate at that level. Saying something seems appropriate at that level. Well, I didn’t say anything. My parents sent me to pre-school and instead of interacting with my teachers or my peers, I sat in a corner all day. I sat there quietly just watching everything going on around me until one of the teachers finally realized that I might not be okay. She took out one of those thermometers that you put in your ear (which was cool and novel at the time) and it turned out that I had a fever. She called my nanny who picked me up and brought me home. When we got home, my nanny Ms. Barbara placed me on our black leather couch, put a blanket on me, and I fell asleep. 

I don’t tell that story because I want sympathy or pity. I really don’t. I tell it because for years I’ve been trying to piece together why I’ve felt different and if that dissonance was due to Autism. I’ve been trying to remember any moment that I can in which I showed signs because as my mom said, I seemed to be the perfect child until I went away to college. Sometimes I feel like maybe I’m just a really good liar and actor and that somehow I fake having Autism. Sometimes I feel like there’s no way I could have Autism because I am not your stereotypical case. I had no developmental delays. I am a woman. I am black. I went to college. I’ve had two jobs and school work at a point in my life. A point in my life which I’m happy to return to. When people think about Autism, they don’t see me. Sometimes, I don’t see me either. Without Autism, I feel invisible. Like someone who is just such a social outcast that they hide in the forest and get trampled by a tree. Like Dear Evan Hansen. But with Autism, I also feel invisible because people literally don’t see me. 

Stephen Shore said, “If you’ve met one person with Autism, you’ve met one person with Autism.” That statement couldn’t be more true. Just because one person with Autism is unable to do something, it doesn’t mean that all people with Autism cannot do it. Just because one person with Autism can do something or does do something, it does not mean that all people with Autism can. Just like every black person doesn’t like watermelon (Raise hand, I hate the texture of watermelon.) and every Asian person is not good at math. We all are different. We all are uniquely human. We create a spectrum of colors that resemble the rainbow, not a black and white cartoon.

Today, I was supposed to go to my Autism support group. But due to the Corona Virus- COVID-19, it was cancelled. My support group is a prime example of how those with Autism are uniquely Autistic. Of course, we have some similarities hence the classification of Autism but besides that we are all different. One man is an adjunct professor of biology, another a manager at Home Depot, another a manager at Aldi. One woman is currently taking remedial classes at the local community college, another is trying to explore her independence. Some are married with families; some enjoy being single. Some are 18 and others were 60. Some were diagnosed as children and others were diagnosed as adults. Like I said, we all are different cases. No one person is alike another person. So why does one Autistic person somehow have to be exactly like another Autistic person? It’s not fair. Those with different ways of thinking and being from what is considered the “norm” are entitled to be themselves as well.

So let me say it again.

People with “low-functioning” Autism are more capable than you think. People with “high-functioning” Autism have more struggles than you think.

Yesterday. Today.

Yesterday marks the day. January 18, 2019. The day I was checked into the ER at Presbyterian. The same day I had come back from Boston with a suitcase full of clothes and a mind full of distressing thoughts. The same day I somehow made it to my grandma’s house, where I dropped off my bag and waited for my aunt. This would be the first time since St. Catherine’s that someone would be with me. The first time in a long time that someone would access a window into the world that was psychiatric emergencies. 

When we got to the ER, everything was taken away from me. Notably, my backpack that contained a book or two, pens, the Bible, and my headphones. I was allowed to keep the Bible. I didn’t think to pack a few clothes. My brain was too disorganized to think of anything besides what my mom calls the seven famous words. I was placed into a room, similar to that of a jail cell. Stripped down bear with white walls and nothing but a small bed. Later my aunt would call this room the “me and you must never part” room, because these moments we shared felt as if I were Nettie and she was Celie from the Color Purple. We sat, her on the outside, me on the inside with walls oceans wide between us for hours. Hours during which blood and urine were taken. Hours during which many people asked, “So what brings you in?” So many times that I had memorized a default response. Hours after which it was determined that I need to be hospitalized, yet again. Stay # 3 within 2 months, stay number 5 within a lifetime. Quite the track record. At last, my aunt was allowed to come in. She asked if I was okay and gave me a hug goodbye. And then like Nettie I went and journeyed towards my own sort of Africa- a foreign, faraway place, for a time period that only God knew. 

My next stop was CPEP- Comprehensive Psychiatric Emergency Program. CPEP was nicer, more welcoming. The walls were painted blue; one had a tv on it. There was a refrigerator with food and beverages, and a place to shower, and things to color or do puzzles with. I mainly stayed in my room. Lying in bed staring up to the ceiling, thinking the infamous thoughts. A nurse came in to check on me every fifteen minutes. During one of these checks, the string in my Bible was detected. They had to cut the string out of my Bible. The Bible I had brought the week after I was discharged from St. Catherine’s with birthday money. That Bible represented a new start and now it was severed, just like I believed my chances to survive were. 

Within a few hours, I was told that the ambulance was here. I was being transferred to Westchester as per my request. I asked that I stay within New York Presbyterian and not be transferred to another hospital, even if it meant going to Westchester. It was night time then, maybe 7 or 8 o’clock. The ambulance ride was unremarkable. At the end, they wheeled me in and lowered the stretcher. I let my legs hang down and then I stepped off. Here I was. In Africa. A place I would call home for the next few months. 

Next up, another round of questioning and physical examinations and doctors, nurse practitioners, and social workers- the whole bunch of them. By the time I got to the unit, it was probably about 10. I was greeted by a nurse and a mental health worker. My blood pressure was taken, my weight, and a body map. I was assigned to a room with a stranger, as is customary. I was too tired to worry. I got into bed and quickly went to sleep.

Today marks the day. January 19, 2019. The day my mother and aunt first came to visit me at Westchester. The day they saw me clad in blue paper scrubs, smelling of must due to not being able to take a shower. The day they brought my toiletries and a few clothes. The day they spent about two hours just being with me and talking to me. The day they once again said goodbye and went home, leaving me there as they would many times.

 Yesterday marks the day. January 18, 2020. One year post my admission to Presbyterian. It starts off at 7:45 am. I get up and get ready for a doctor’s appointment, putting my leggings on underneath my sweatpants so that I can go to the gym afterwards. At the doctor’s, I’m reminded of the physical scars of my battle. The tiger like stripes that line my forearm that I show as a last resort as the nurse struggles to find a vein for blood work. The dreaded number on the scale from weight gain. 

At the gym, I try to distract myself from thinking about what this day meant and what it means now. I blast Jesus is Born through my headphones. “Lord I love you more than anything. Lord I love you more than anything.”On the elliptical, I push my legs up and down as hard as I can. On the rower, I pull and pull. On the treadmill, I put the incline all the way up. I’m trying to have a good workout, but I’m still somewhat distracted. I want to start running. But I stop midway. I can’t do this. I just can’t do this right now. Last year, I was in the hospital on this day. I’m still trying to process it all. I don’t know how to feel. Happy. Sad. Confused. Relieved. So many different feelings over something some people might forget. 

Mom picks me up. She asks how my workout was. I say okay. Could have been better. That’s me; always discounting my efforts and wanting more. We get home. I make us my favorite strawberry banana peanut butter smoothie. I take a shower. Next thing I know, I’m asleep for most of the day. Sleeping away the thoughts about what this day means. Trying not to process. Slightly worried that this tiredness I’ve been feeling may be the start of another episode. 4:00pm. Time to go to work. Work. Home. TV. Then I’m sleeping again. 

Today marks the day. January 20, 2020. One year post the day after my admission to Presbyterian. It takes me a while to get out of bed. For a minute, I contemplate not going to church. Then I think about how good God has been and get out of my bed. I also think about my post church Whole Foods trip that is a highlight of my week. I get in the shower. Get dressed. Make up my bed. Brush my teeth. Wait for the rest of my family and then off to church we are. I feel kind of weird. Not like myself. Still processing what everything means. The ride to church is a quiet one.

The message is entitled “Get up, You Ain’t Dead”. PT talks about the story of the religious leader who asked Jesus to awaken his daughter from death. He talked about silencing the noise. Silencing the noise of doubt. Silencing the voices in your head. The ones that say the seven infamous words. That message was for me. He talked about not listening to the devil’s funeral music. I can’t count how many times I listened to “This Woman’s Work”, the Maxwell edition when I was depressed. That message was for me.  He talked about getting up and knowing that as long as you have breath in your lungs, God has a purpose and a plan for your life. God has the ability to do anything as long as you have the faith to believe. That message was for me.

Yesterday marks the day. The day that I was admitted to Presbyterian.

Today marks the day. The day after I was admitted to Presbyterian.

Both days mark the start of a long journey. A journey that I am still processing. A journey I don’t know how to feel about. A journey I sometimes can’t find the words to say about. But I do know one thing, through it all God and my aunt’s spirit were carrying me. So many times, I saw one set of footprints. So many times, I lost my faith and my hope. But God, You were carrying me. Auntie, you were carrying me.

Today marks the day. January 19, 2020. The day that I decide to silence the voices. The day that I decide to silence the fear. The day that I decide to walk in faith and not by sight. The day that I realize that my life has a purpose and a plan. The day I start writing that movie that’s been burning inside of me.

Simple not so simple question

“Womp womp meep meep womp womp wah?”

Pause. Wait for a response.

“Makayla, womp womp meep meep meep meep?”

Hearing my name awakens my word processing skills. Before that, noise is just noise for the sake of my sanity. There’s a lot going on. The hum of the dishwasher, the clanging together of silverware, the slamming of bins onto the counter, talking, just to name a few. So to keep my focus and avoid going into sensory overload, I sing. And allow the clanging and banging, beeping and buzzing to become the percussion and bass for whatever song I quietly sing in my alto/tenor. Today it’s Count Your Blessings from Jesus is Born.

“Woah, woah the blessings. Woah, woah the blessings. Can’t you see what, what God has done.”

“Makayla. Have you ever womp womp meep meep?”

Hearing my name awakens my word processing skills. And now I’m fully back into my outer world with the clanging and banging and buzzing. And now I’m struggling to fully comprehend what’s being said to me amidst all the noise.

“What?” I say.

“Have you ever been on antidepressants?”

“Umm…”

Umm is what I say when someone says something to me and I either don’t know what to say or contemplate whether or not to say what I do have to say. Right now, this umm is a result of the later. The truth is I have been on antidepressants. I am on antidepressants. That’s the truth. But do I want to tell the truth? Do I want to tell the truth to this person?

This person is the person who arrived 40 minutes late at work today and has arrived just as late in the past. This person is the person who always goes home early. This person is the person who is always talking about her boyfriend. This person is the person who practically bragged about flunking the 11thgrade and almost dropping out of high school. This person is the person who I’ve talked about after work and to be honest have judged- as someone who doesn’t want to work and is quite juvenile and immature. But now I’m second guessing those judgements and my right to even judge in the first place. And I’m also thinking that while I was judging her, she was probably judging me too. It’s human nature. Why else would she ask me? 

Maybe I look like someone who has depression and needs antidepressants. Maybe I look like someone who can use antidepressants for other reasons like insomnia or pain. Maybe she’s just asking because I am someone she can ask. I don’t know. I can’t read people’s mind. 

I think to the whiteboard in my room and the new saying I wrote on it this afternoon. It says,  

“Depression is a liar. Continue to walk in your truth.”

Depression is a liar. And continuing to walk in my truth means telling the truth, boldly no matter what. 

“Yes,” I say.

“Oh, they want to prescribe me antidepressants because I have anger issues. But I don’t know how they are going to make me feel. Like how do they make you feel?”

“Umm…”

This time the umm is because I don’t know what to say. I can’t recall another time that someone asked me about what it’s like being on antidepressants. I start to realize that no one knows what it’s like to be on antidepressants except people on antidepressants. And that even though the number of people taking antidepressants has been on the rise, there are still many people who don’t know about antidepressants. 

So, I decided to take this opportunity to express some of my knowledge on antidepressants. And this time, I will use the power of 3 (my favorite number).

  1. There are many types of antidepressants.SSRIs- Selective Serotonin Reuptake Inhibitors,  SNRISs- Serotonin Norepinephrine Reuptake Inhibitors, MAOIs- Monoamine Oxide Inhibitors, Tricyclics. Just to name a few. Each antidepressant affects brain chemistry by either increasing positive brain chemicals or decreasing negative ones. The way these drugs work is dependent on the ability of an individual’s brain chemistry to submit to such changes. Leading to my next point….
  2. Antidepressants are not magic pills.You don’t take an antidepressant one day and feel cured the next. In fact, it takes 4-6 weeks in most cases to determine whether or not a drug is effective. In some cases, after this time period- the drug is determined to be ineffective and another one is tried. Sometimes it takes several drug trials to find a drug that works for an individual’s unique brain chemistry. Trust me, I know. Also, antidepressants are not magic pills in the fact that they are not perfect. Just like all other drugs, they come with side effects. Some of these side effects can be minor like headaches or nausea while others can be more serious like increased suicidal thoughts. 
  3. Antidepressants are not only used for depression. Antidepressants can be used for other mental health concerns such as Obsessive Compulsive Disorder, anxiety, anger, insomnia, impulsive behavior, panic disorders. They also can be used for conditions completely unrelated to mental health like chronic pain, migraine, and fibromyalgia. 

That’s a little of my knowledge on antidepressants. Now here’s a little bit of my point of view. Taking antidepressants can be tough. It can be very difficult finding the right drug or combination of drugs that actually works. Then once you find a drug that works, dealing with the side effects is just another battle to the war. But for me, someone who was deeply depressed and extremely suicidal, antidepressants have brought a lightness and a joy back to my life. I can be the self I was before depression- a bright, quirky human. And that doesn’t mean that I don’t still have bad days. I still struggle with depressed thoughts and feelings most days; but they no longer strangle me and take my breath away. They no longer take my voice away. I can speak. I can write. I can laugh. I can smile. I can just be free. 

The Same. The New.

I stand dressed in only a bra and panties. A quick glance in the mirror.

You look fat. You look disgusting. You are fat and disgusting.

“You look great.” That’s what mom says.

I don’t believe it. I’m not calling my mother a liar. I just think we have different points of view. To her, I have curves that flow through my breasts and thighs creating a perfectly shapely silhouette. To me, I have lumps and bumps, creases and folds, globules of fat that sow a seed of disgust in my chest and strike thunder between my touching thighs. I hate my body. I wish I looked more like the girls on television and in the magazines. Slim, slender, barely there, almost disappearing. Why must my body stand strong in stark rebellion against society’s model image? I am nobody. And if I’m somebody, I want to be just like everybody else.

I step onto the scale. Watch the numbers climb up the stairway, but it’s not to Heaven but to my own special hell. 175.

175. 175. 175. I hate you. Go fucking kill yourself.

I step off. Off the scale. Off the pedestal I placed myself on this morning. When I woke up with a smile on my face saying this is a new year. Praise Jessi, you made it through the last. When I listened to Amy Winehouse and Big Thief as I cooked vegan macaroni and cheese. When I grooved and danced in that jointless way only I can to Kanye’s Jesus is Born. I am off that pedestal now. Now I’m not even on solid ground. I am amidst the dirt. I want to be buried in it. All because of a number.

“You lost or stayed the same?” That’s what mom says as I start putting on my baggy sweatshirt and sweatpants. My body is hidden once again. I feel guarded again.

“The same.”

The same is not the same though. I want to be the same I was. The same I was when I was back in Westchester. That same would be 155. I haven’t seen that same since starting this new medication. Fuck medication. I want to get off. Get me off this medication now. Right now. I fucking hate being on this medication. I need to calm down.

Back in Westchester, sometimes 150 or the high 140s would be the same for a few weeks. Not now. Back then, I didn’t have to worry about my weight. For the first time in my life, I felt like my weight was normal. I wasn’t overweight according to BMI or to myself or anyone else. Some people actually thought I was skinny. That I was losing too much weigh. I was sick then. Really sick. I felt like I was dying. And I liked it. I wanted to die. I don’t want to die so much anymore.

Now, the feelings of wanting to die are the same. The same dull ache that has traveled with me throughout the years of late childhood, switched trains to adolescence, and boarded the bus to adulthood. That feeling has been the same for so many years. I woke up feeling like this could be the year that other feelings could be the same. Similar, usual, familiar. Like happiness, joy, and laughter. How could I let myself carry this same feeling into the new year?

I hate you. Go fucking kill yourself. 

“Is that fine?” That’s what mom says.

I don’t reply.

“Is that fine?” That’s what mom says again.

“It’s fine.”

It’s not fine. I’m just saying that it’s fine. And all of the sudden I’m feeling again. Guard down. And even though I wrote myself a compassion letter, I don’t want those feelings to be the same. The angry ones and the sad ones. It’s not fine that I have gained 20 pounds because I am on a medication that actually works. It’s not fine that I have gained 20 pounds because I don’t want my brain saying,  “Why am I still here? Why am I not dead?” every single morning. It’s not fine that I have gained 20 pounds because I don’t want to say the same prayer every morning and every night. 

God please take me, I’m not worth the fight.

It’s not fine. It’s not fair. It’s not an even exchange. Why must there be an exchange in the first place? Why can’t I just have both? A weight I am content with and happiness.

You can have both, bud. 

I can have both. My weight should not be a factor towards or against my happiness. My weight should not be a defining characteristic. My weight is just a number. My weight is not who I am. 

New year, new you. I hate that saying. As my therapist says, it makes it seem like everyone will wake up and be 25 again. That’s not true. But it is true that every day is an opportunity to be a new you. A kinder you. A braver you. A more compassionate you. That’s what I want to be. Braver. Kinder. More compassionate. Wiser. Stronger. Healthier. More of an individual. More eccentric. More unique. More me. Not a number. 

The Holidays- Part 1

The other day mom and I were in the car and she mentioned a post by Charlemagne. The post talked about how the holidays can be especially challenging for those with mental illness. As someone with mental illness, I know this to be true. But I also want to add, as person with ASD, the holidays are also a difficult time for some of the same reasons.

Here is a list of 7 (my second favorite number) things that make the holidays difficult for people with mental illness and ASD. 

7 Reasons Holidays are Hard for People w/ Mental Illness and ASD i.e.- Me

  1. Hustle and bustle. Around the holidays, life seems to be going at supersonic speed. Every day seems to be a countdown to Christmas, Chanukah, Kwanza, New Year’s, etc. Everyone is out. Everyone is in a rush. It can be a lot. Especially for those dealing with mental illness and ASD. It can be tough dealing with the crowds. It can be tough dealing with the overall excitement and anticipation when your thoughts and mood may subscribe more to a “take one day at a time” approach. Also, the pressure to engage in holiday cheer and excitement or feeling like you are missing out on it can be stressful to those who sometimes just don’t feel like it. For people with ASD, not only can coping with the amount of people around be difficult,  but also understanding the motives behind their strong holiday emotions and traditions. 
  2. Change in schedule. For people with ASD, schedules and routines are key. The world can seem chaotic and confusing; and therefore a little predictability can be super helpful. Often times during the holidays, special events are thrown in and schedules are thrown off and put out of whack. This can cause stress, anxiety, and sometimes leads to a greater likelihood of Autistic burnout, non-verbal episodes, meltdowns, etc.  For people struggling with mental illness, sometimes it truly is about taking one day at a time. A lot of times that entails having a schedule and keeping to it. So holiday times in terms of schedule can be rough as things out of the ordinary happen and sometimes things are just go with the flow. 
  3. New people/ distant relatives. People come along with the holidays. Sometimes these people are distant relatives and/or friends that are not seen or spoken to often. When you are dealing with mental illness, the stigma surrounding the struggle can make it seem as though everyone is judging you, especially people you don’t really know. Also, there can be stress associated with the type of questions that are asked during the holidays by those once-a-year type of relatives. What have you been up to? Shouldn’t you have graduated by now? When will you settle down and start a family? It can be hard determining what to share and what to keep private, and not feeling pressured to disclose things uncomfortable to share. For kids with ASD and their parents, it can be tricky dealing with possible judgements from family members who are not used to certain behaviors and traits. Family members might also have well-meaning suggestions such as following a gluten-free diet or trying CBD or whatever it is that actually come across as unaccepting and judgmental. For some adults with ASD, there can be pressure to suppress autistic traits and “be on their best behavior” for guests. I know this has been true for me at family gatherings; and in the end, trying not to be myself made me look more awkward than being myself would have. 
  4. Dreary/cold weather. Simply put Seasonal Affective Disorder is real. For some people the shorter days and colder weather equate to decreased mood. 
  5. Pressures of a new year, new you. We all know the mantra “new year, new you”. While it is good to focus on self-improvement, it is important to set goals wisely. Sometimes for those of us suffering from mental illness, our goals can take years to achieve or be unattainable. And we must accept both circumstances and be okay with our reality. Some goals like I won’t go into the hospital this year or I’ll stop needing therapy or I’ll stop needing my medication can be slippery slopes. There can be pressure from ourselves and others to achieve such goals that may prevent us from receiving the help we need. And in our social media society, once goals are put out there, it is difficult to admit they have not been achieved- especially when we see others achieving their goals. It is hard to remember that we all have our separate goals and that some are more achievable and timely than others. 
  6. Missing lost relatives/ old memories and traumas associated with holidays. Everyone who has lost someone knows the achy feelings of missing and loss during the holidays. It affects us all, but especially those with mental illness. Sometimes deaths of certain family members and/or friends are triggers for mental illnesses. For some with ASD, it may be difficult to process and understand feelings and realities about lost relatives or friends. The holiday time can also mark certain periods of trauma or misfortune. Personally, Christmas is a difficult time for me as it marks the middle of my last major depressive episode. It fell right in the middle of two hospital stays which led up to my longest hospital stay. I was on a downward spiral all throughout the holidays and just trying to hang on by a thread. Knowing where I was last year and knowing where I am this year is cause for both gratefulness and fear. I am grateful to be in a better place. But I am so afraid of relapsing and returning to the place I was in last year. 
  7. Lights, camera, action. Sensory issues are big concerns for people with ASD. What seems like a regular amount of light and sound can be jarring, let alone the bigger, brighter, louder vibes of the holidays. For those with mental illness, it can be difficult and exhausting dealing with all the pictures, decorations, and constant moving around. 

And those were 7 reasons why holidays can be difficult for people with ASD and mental illness.

I hope this blog post was helpful in either understanding your own struggles or the struggles of someone you love.

Next up, 7 ways to make the holidays easier as a person/ for a person with mental illness and ASD.

The Big 5-0

6:45am

Mom enters my room. Excited. So much so she does a little cha-cha dance to the rhythm of her own drum. The first thing I see. Her face. I love it. Too many days I saw white ceilings and white walls. And mental health workers with clipboards and blood pressure machines. 

Time to get up. It’s her big day. The day she has been waiting for and planning for weeks. The day she has been talking about and asking how outfits look and which looks better for weeks. It’s time for the photoshoot. Her big 50thbirthday photoshoot.

I stay in bed a little longer. A little lag is normal. But some mornings more than others. Today is one of those more than others type of days. She comes and exits a second time. I’m still in bed. Eyes closed. Thinking. Preparing. For lots of lights, camera, action. Not my favorite, but my mom loves it. And it’s her day. But unfortunately, it seems like it’s going to be my day too. An off day. Why does it have to be today?  I just want to be there and happy for her? I hope she follows Monica’s advice. Because “it’s just one of those days, don’t take it personal.”

I hate my off days, especially when they fall on someone else’s day. It makes it seem like my happiness only comes from being the center of attention and can’t be for other people. Or that my mood and behavior are reactions to others getting attention and me not liking that. Not true. Sometimes it’s just one of those days. That’s what it’s like to cope with major depression.

I remember summer 2018. California. Dad’s days. The start of my last long depressive episode. Many churnings were going on in my brain. Yet I tried to smile for the camera and make conversation. Depression brain found that hard; thinking about isolating and death was easy. ASD brain found it hard to deal with the change/lack of schedule. It was supposed to be family time, and we were supposed to just wing it and go with the flow and have fun. But I didn’t have fun; and I felt so bad about it. I kept how I felt to myself for the whole trip, and even texted my aunt an apology for my anxious, moody disposition when we got home. 

I remember Bryce’s middle school graduation. Another one of those days. I remember snapping a photo of mom, dad, and Bryce. Thinking- This is the perfect picture of my family. It doesn’t have me in it. Soon all of the pictures won’t have me in it. 

Now it was mom’s day and I felt depressed. I just wanted to lie in bed with my weighted blanket, headphones, and iPad. But I couldn’t. Today was mom’s day and I wanted to be there for her. So onward I pushed. 

Fast forward to 

9:30am

We arrive at the studio. It’s somewhat familiar as Bryce and I had a photoshoot there a few weeks back. This time we’re in room six- the room with the flower wall. As we walk through the door, we see that that Lexi, the photographer, is already there. Mom executes all the pleasantries, the hugs and kisses, and then rushes into the dressing room to put on the black dress.

The black dress is what mom would call a simple wrap dress; but it has a little gold shimmery design at the bottom. I start off the playlist. At her request, it starts off with Lizzo. Like A Girl blasts in the background as lights, camera, action- the photo taking commences. The first shot is a reflection photo, one of her looking in the mirror at herself. It comes out absolutely stunning, a preview to the rest of the shoot. For the next few photos, the backdrop is the exposed brick walls. Mom looks absolutely beautiful. Smiling and posing like the model I’ve always seen her to be. A couple clicks of the shutter and flashes of the light, then it’s time for an outfit change. Next up- the green dress.

The green dress is the triple slay. Short. Sparkly. Sleeveless. It shows off mom’s long slender curves, especially her long legs. The ones I bemoan over the fact that I didn’t inherit. Mom’s makeup gets a tune-up while her legs get an oil change. My dad loves seeing my mom’s legs nice and shiny, adding to the triple threat a quadruple. She looks like a fine, well-oiled machine. She poses against the flower wall, accented by the big 5-0 balloons and a champagne bottle. She looks like she’s really having fun. Just being herself. That makes me smile despite having one of those days.

Fast forward to

The Big Surprise

Outfit change number 3 has already happened. Now mom is in the gold dress- a long fitted gown with a slit and low bust. We all stand in the hallway waiting for the perfect second to go in. We being me, my grandma, my aunts, and the big surprise- my dad. Dad told mom that he had to work that Saturday and that there was no way of him getting off. But he got off anyways. He didn’t tell anyone until last night, when he asked me the details of the shoot. Now he was here to surprise her with his presence. He waves his hand signaling grandma and my aunts to go in first. Then I see him walk in. I walk down the hallway. I need a little break. Sometimes I like to just slip away. Plus I know mom’s reaction will be loud and dramatic. Suddenly, I hear shrieking coming from down the hall. I know it’s mom. She is ecstatic. I walk back to the room to see her jumping up and down on my father. Everyone’s smiling and laughing. Mission complete. Mission success.

Fast forward to

Family portraits

Now we’re on to outfit number 5- jeans and a white shirt, the outfit our whole family is dressed in. Time for family portraits. As we pose and smile in all different variations of people, I can’t help but miss my Aunt Paula. I wish she was there with us. 

Mom wants a picture of just our four- the fab four as she likes to call us. Today is one of those days I’m thinking about what it would be like if the fab four would be four no more. I wonder if my family would miss me with the same ache that I miss Auntie Paula. I wouldn’t want that for them. I feel like I ruin every picture I am in. But I still try to smile for the camera. 

In between pictures, I take a moment to just think. About life, auntie, struggles, my family, my future. 

Fast forward to

Mom’s Kitchen

The photoshoot is done. We go out to eat together as a family. Once we’re seated, I excuse myself to the bathroom. Bathrooms are havens for Makaylas. Almost every place you go there is a bathroom. Bathrooms are quiet and you get your own stall. And you can just close the door, take a deep breath, close your eyes and re-center yourself. At least, I can. I always do. I am at the sink washing my hands when mom enters in. It’s the first time we’ve been alone all day besides the cha-cha dancing in my bedroom this morning.  She asks me something. 

“Are you okay?”

“Yeah.”

“Yeah?”

“Ya.” (Inside Joke)

“You sure?”

“Yeah. Just having an off day.”

“I can tell. It’s okay. Thanks for pushing through. You guys being there really made my day. ”

“Your welcome.”

Mom, I will push through for you any day. No matter what. If it’s one of those days, if it’s a day when the thoughts are bad, if it’s just a day when I feel defeated and don’t feel like it. I will push through. I push through for you, and the beautiful family that you’ve made that I am honored to be a part of. 

Happy Birthday, Mama. 

I love you. 

On Anger and Tears

 This has been one of the hardest blog posts for me to write. I’ve written it and erased it many times. Written it many different ways and points of view. At one point, I just thought I wouldn’t share this experience. But it is important for me to share because the truth is everyone gets angry and everyone sheds tears, including me. Tears and anger are amongst the “closeted” topics. We don’t talk about how anger sometimes results in punched walls, and are encouraged to save our tears for our pillows. But tears and anger are crucial parts of the human experience. 

This week, I cried and got angry, things I rarely do. And that’s okay. My mom says so, my therapist, and my therapist friend say so. But convincing myself has been another story. 

In the hospital, my therapist created these things called compassion letters. It’s where you write a letter expressing only compassion towards yourself. Self-compassion is something I have been working on. And I will keep working on it because it produces self-love and self-worth, two things we all need. 

So, I decided to write myself a compassion letter. Another thing I haven’t done in quite some time. Here it is.

Dear bud,

Today marks a week since the incident at work when you got angry. It has also been a few days since you cried. I know you can’t remember the last time that either happened. They’re that rare and surprising of occurrences. Because you’ve made it a rule that you can’t cry or get angry. A rule that prohibits you from expressing your emotions, especially the negative ones. A rule that you broke in the last week. A rule that when broken makes you feel disappointed, weak, out of control, and a little scared. 

I know that breaking the rules is something very against your core. Rules give you structure, predictability, the safety you yearn for. And that’s okay. Some rules have purpose and are meant to follow. However, there are some rules that have no purpose or maybe in other words have a detrimental purpose. The rule that you can’t cry or get angry is one of those rules. And I want you to know that it’s okay to break that rule.

It’s okay to cry and get angry. Because despite how you feel sometimes, you are human. You are part of the planet Earth. You are a member of a species that can feel and speak and think. God created you to do all of this. And all that God created is beautiful. Including you and your emotions, the happy ones and the sad ones. I was about to say the good ones and the bad ones, but there is no such thing. All emotions are good. They all serve a purpose. They make life exciting and real. They create both balance and spontaneity. They fill our bodies and charge our movements. They make us who we are. 

Part of living your truth is discovering who you are. Your story is part of who you are. And just because it is part of who you are, it doesn’t mean it has to be who you are. Do you know what I mean? It’s like that pie chart from therapy. There are many pieces that make up the whole, not just a whole without parts. Despite all the pieces, the broken ones included, you are still Makayla. And it’s okay to cry over the broken pieces. Your life before mental illness. Your college experience. Your Boston life. It’s okay to be angry about some of the pieces too. Westchester. Mental illness. The experience you have put your family through. Not feeling like a normal 21-year-old. Not being included. It’s okay to cry and be angry about all of that. It’s normal and human. 

So, with the new year fast approaching, I want some new things for you, bud. New year, new you. Another opportunity for improvement just like every day is. This year, I want you to cry tears of joy and sadness. This year, I want you to get so angry that you fight for a change. This year, I want you to be a living, breathing, feeling participant of the human race. 

And remember that it is totally okay. I give you permission. You have my blessing to feel.

Love you,

Makayla 

Sacrifices and Giving Thanks

The other day I was talking to a friend about my medication induced weight gain. Yes, I have gained weight. And yes, I am talking about it. Weight is a topic frequently kept “hush hush”. Mostly only spoken of in regards to weight loss, as dieting and the quest to be skinny are common topics of conversation, especially among women. But the issue of gaining weight or being overweight is seldom discussed, except when it comes to extremes like the stories on My 600lb Life. 

I am not ashamed to say that I have gained some weight. Maybe a little embarrassed, I have to admit. Gaining weight or being overweight is often associated with a lack of self-control and self-discipline, a stigma I don’t want to be associated with or find to be part of my truth. However, I think it is very important to discuss the issue of medication induced weight gain as most medications come with side effects. Especially the ones that work.

Side effects are just another card dealt to us dealing with mental illness, or any illness requiring medication for that fact. In the past, I have tolerated medication pretty well. But also, in the past, I have taken medications that had little to no effect on my symptoms. Hence the term treatment resistant depression. Two medications have had the greatest impact on my symptoms, and with both side effects were included. A medication I used to take made me extremely tired, restless, and stiff. Yet my suicidal thoughts had mostly went away. After a few months on the drug, I realized that I rather manage the thoughts than manage the side effects, which took weeks to wear off. 

With the new medication I am on, I’ve experienced an increase in mood and a decrease in obsessions and compulsions. I’ve been feeling great! Writing again, laughing and smiling just to laugh and smile, feeling like the self without depression. I’ve been feeling like me. But feeling like me comes with a price, a sacrifice. Weight gain. For some others, feeling like themselves may come with other sacrifices like insomnia, sexual disfunction, loss of appetite, nausea, drowsiness, and the list goes on and on. One of the hardest parts of mental illness and seeking treatment is deciding which sacrifices are worth it, which aren’t, and often times choosing between the lesser of two evils. 

In the end, I started talking to my friend about how life is all about sacrifice. In life, you can’t have it all. There are gains and losses, ups and downs. Sacrifice. An act of giving up something valued for the sake of something else regarded as more important or worthy. That’s what life is, and in this holiday season, I’ve discovered that’s what being thankful is too. Sacrifice. Realizing all the sacrifices in your life- the ones you have made, the ones made for you, the ones you will never have to make. 

So here are 7 (my second favorite number) things that I am grateful for:

1. God, Jesus, and My Faith

As a Christian, I believe that Jesus made the ultimate sacrifice. For His life, the forgiveness of all my sins and imperfections was exchanged. And now I have a duty to present myself as a living sacrifice unto God. (Romans 12:1) For me, this means embodying my favorite scripture, John 11:4. Despite the challenges of my mental illness, I will endure and not die. This part of my life will strengthen my testimony and glorify God. Just the act of having faith is a sacrifice as you give up doubt and despair in acceptance of God’s love. In some places and times, there was and is the added sacrifice of persecution. So, I am very grateful for the right to practice my faith.

2. Family and Friends

For this one, I almost have no words. I can never repay these people for their love and support, especially during this trying year. From visiting me in the hospital, just hanging, writing me encouraging cards and emails, calling, bringing food, praying, texting, sharing their own stories of struggles. So many things. So many sacrifices made to give me love. So, shout-out to my people: Tara, Cody, Thalia, Zia, Mikayla, Laura, Eileen, Alana, Chelsea, Feliciano, Ms. Cecille, Ms. Mary, Ms. Lucy, Ms. Cynthia, Bianca, Aunt Lorita, Auntie, Gram, Dad, Bryce, Mom, and anyone that my mind but not my heart has forgotten to mention.

3. Food, Water, Clothing

One often taken for granted. Something I’ve never wanted for. But for some, all they want for. For some, these are their sacrifices. Not buying groceries to keep the lights on. The people in Flint, Michigan. A parent wearing a worn-out pair of shoes to save money for their child’s field trip. And that’s here in the U.S, not even to mention third world countries. Be grateful. I sure am.

4. Education

A gift that can never be lost or given away. A gift given to me by my parents. Despite not being rich, they afforded to give my brother and I a private education. I am grateful for the schools that I went to and how they have shaped who I am today. Just the experience of going to schools with much richer classmates made evident how much of a sacrifice my parents were making. Very humbling. I also am thankful that I have received an easily accessible education despite my race and gender. And that I experienced some caring teachers that sometimes made sacrifices such as buying supplies and necessities for students.

5. My Treatment Team

Past and present. These individuals have sacrificed much to preserve my life and my spirit during difficult times. Financial responsibility for their education and training. Their time. Their feelings, opinions, and judgements to be unbiased listeners and evaluators. Without these people, I don’t think I would still be here. I am so grateful for the sacrifices they make to do their jobs, and do them well.

6. Home/Shelter

My parents made many sacrifices in order to move to the house that is the only place I have ever called home. It has never been easy for them as they were products of low-income projects apartments and the urban lifestyle. But because of their sacrifices, I have a place to call home. I do not take that for granted. Some have not a home or even a shelter. It truly is the little things in life that matter most. 

I am also grateful for being home for the holidays with my family. For half of this year, I was in the hospital, yearning for home. Some days I just wanted to give up treatments so I could sleep in my own bed. Or be in my own room that was filled with books, music, and pens! Pens are such a luxury to those who have been in a psychiatric unit. Especially for me, as I have a bit of an obsession with office supplies. I hope you don’t take for granted being home for the holidays.

7. My Life/ Being Me

Today, I shouldn’t be alive. I should have died at age 18. But thank God for giving me the strength to live another 3 years despite battling mental illness. I will keep fighting as hard as I can to not let my life be sacrificed to mental illness. Because we all deserve to live. We all deserve to be happy. We all deserve to be ourselves. Including me. And it’s pretty cool being me. The way my brain works with all of its quirks. The things that make me laugh, smile, and, on rare occasions, flap with excitement. The great support system of family and friends that I’ve been blessed with. My love for books and writing. All the things I have to be grateful for. Life is good.

I wish you all a Happy Thanksgiving. I hope you remember during this holiday season all the things, big and small, that you have to be grateful for. And with all the good holiday food, I hope you don’t gain too much weight. But if you do, that’s okay too. It’s always a perfect time to practice self-compassion. 

Cups

The green water cups are supposed to go on the right and the blue coffee cups are supposed to go on the left. That’s the way it’s supposed to go. 

I cannot get that thought out of my head as I look at a cart with blue coffee cups on the right and green water cups on the left. Don’t look at it bud. Just ignore it and the thought will go away. But the mind cannot ignore what it sees as fundamentally wrong; and it’s fundamentally wrong to not do your job to the best of your ability. It’s my job to look at that cart, to make sure that it’s stocked with 7 coffee cups and 3 rows of water cups on the left and right respectively. 

The green water cups are supposed to go on the right and the blue coffee cups are supposed to go on the left. That’s the way it’s supposed to go.

My hips rock in rebellion. My hands squeeze together trying to keep it together, trying to maintain the semblance of sanity. My feet flutter back and forth on the black mat marked with circles. I used to not be able to step on circles. It’s okay, bud. It’s okay. It’s not okay. The straw is breaking the camel’s back. And I am the camel. But instead I have two huge lumps on the chest, making it hard for me to breathe. Deep breaths buddy. Come on you can do this.Inhale.1, 2, 3. Exhale. 1, 2, 3, 4, 5, 6, 7. 

The green water cups are supposed to go on the right and the blue coffee cups are supposed to go on the left. That’s the way it’s supposed to go.

And I’m supposed to have a rag. There are bread crumbs and hot chocolate powder all over my station. Chicken broth drips down the coffee machine making a slime like design similar to Nickelodeon. And the bread is supposed to be neatly in front of the plastic wrap. Rye, wheat, white. And the cutting board is not perfectly straight. And today they didn’t have the long knife. And there are supposed to be 3 honey teas, and 5 nectar teas, and 1 regular hot chocolate, and 3 diet hot chocolates. And the lids aren’t in the right spot. I can’t describe the right spot. But they aren’t in the right spot. 

And the green water cups are supposed to go on the right and the blue coffee cups are supposed to go on the left. That’s the way it’s supposed to go.

Relax, buddy. You’re okay. It’s okay. I am not okay. It is not okay. My hips are rocking rebelliously. My hands are squeezing stiffly, strangled by gloves. They stick to my skin, silently scourging me. My feet are fluttering frequently. Right now, I don’t look normal. There is no such thing as normal. That’s not what stigma says. I don’t look normal. I look anxious. I look autistic. I am anxious and autistic. 

And what if particles from the peanut butter go onto the tuna salad sandwich, and that person is allergic to peanut butter. Change your gloves. Wipe down your station. But I have no rag. But I need to wipe down my station. And what if particles from the tuna salad sandwich go on the ham salad sandwich and that person is allergic to seafood. Change your gloves. Wipe down your station. But I have no rag. But I need to wipe down my station. And what if when you grab the jelly particles from the bread go on it. Then if someone needs to make a cream cheese and jelly on gluten free bread, the gluten particles will contaminate it. Change your gloves. Wipe down your station. But I have no rag. But I need to wipe down my station. And what if by accident you somehow poison the elderly and make them die. Change your gloves. Wipe down your station. But I have no rag. But I need to wipe down my station.

And the green water cups are supposed to go on the right and the blue coffee cups are supposed to be on go on the left. That’s the way it’s supposed to go.

Fluorescent lights flicker. Water is being poured into the mop bucket. Silverware clanks. Trays are slid and shuffled. Wheels roll. The coffee machine whirs then stops, whirs then stops. People speak. The gloves. The shoes. The uniform. 

And the green water cups are supposed to go on the right and the blue coffee cups are supposed to go on the left. That’s the way it’s supposed to go. 

People clean something well or do something in a particular way, and then they say, “Oh, I’m so OCD.” That’s a privilege. To say you have something that you really don’t have. I have OCD. This is what it is like for me. A strong urge to constantly obsess over numbers, order, contamination, and green and blue coffee cups.