When Hyperacusis and Tinnitus Turned My World Upside Down

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A few years ago, prescription medication damaged my hearing. I now have tinnitus, which is a constant ringing in the ears, something you may have experienced temporarily after seeing a concert. I also have hyperacusis, an uncommon condition where loud or percussive sounds physically hurt me — and aggravate my tinnitus. This means I am vigilant about protecting my ears, wearing earplugs or a headset virtually all the time I am not by myself. It turned my world upside down.

When this first happened, I went into crisis. It felt like my life was ruined. It took me about a year to wade through that, to get past the put-one-foot-in-front-of-the-other stage. I eventually discovered I am still able to fully participate in my life, just not in the way I had envisioned. There are a lot more hurdles for me than there used to be, and a lot more sacrifice.

I still collapse about my hearing from time to time, though the frequency is decreasing. I get sad and angry about letting go of so much I once had. At my worst, when all the raw sadness and anger bubble up to the top, I feel like I want to fold in on myself until I do not exist. Returning from that raw place usually involves talking a lot with friends. One of the skills I developed through being in a men’s group (which I never would have joined had I not had my hearing crisis) is reaching out when I need help. It also involves recognizing that these overwhelming feelings are rooted in my younger self, and then having compassion and love for that person. I truly understand what he is feeling. My adult self has a better perspective. I list all my blessings, and I sit with them, knowing that otherwise I would take them for granted. I practice gratitude. I try to notice all the things in my body that are working well. When I am my strongest self, I comfort little James. Then I try to pour some of that compassion and love into my life and into those I am lucky enough to share it with.

There are some things in my life I can no longer participate in, like events and gatherings that involve my family and friends. It sucks. There’s no getting around that. But there is so much I can do. I’m glad I can still make music, and that is because I control the volume knob in my studio. It took me over a year to find my way back to music.

There are still times when I’m around my son or small group of people without any hearing protection, and then something funny happens and we all laugh. I experience the initial joy of the moment immediately followed by the pain of the sound. Then the ringing in my head gets louder and captures more of my attention. It is hard to sit with. It is not something anyone I know has experienced before, and that is isolating.

man wearing headphones

I am stronger now, and quite frankly, much more satisfied with my life than I was before tinnitus. Before my hearing issues, I spent a lot of time searching for things to do, constantly feeding my need to be engaged with an activity. I hadn’t considered what I really needed was more stillness and depth to feel more fulfilled with my life. I’m able to access my emotions more, and feel far more present in my life and my family. Overall, I’ve never been happier to be alive.

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8 Ways to Support the Chronically Ill During the Holidays

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Well, it’s that time of year again. The air is cooler, leaves are falling from the trees and decorations are being displayed.

The holiday season has officially commenced.

For many people, the holidays and all the associated festivities are a wonderful time of year, bringing family and friends together to celebrate.

But for those of us who are chronically ill, holidays can cause an increased level of stress, and often leave us feeling even more isolated and left out from “normal life.”

Some who are chronically ill have all but been abandoned by their family and friends. The dinner and party invites have ceased, and the mailbox is devoid of any cards sending well wishes. It can be incredibly painful to hear about the events they were once invited to or to see their old co-workers on social media at the annual holiday party, snapping selfies and drinking signature cocktails. 

For others, the endless obligations associated with the season can place a kind of pressure and strain on us to push ourselves to appear as able and “normal” as possible — often at great costs to not only our physical health but our emotional sanity. 

Family dinners, ugly sweater parties, holiday events for the kids, religious celebrations and spouses’ work parties monopolize the calendar, creating an environment where no time exists for rest and self-care. In our dizzying effort to show up and participate, our bodies often have their own plans and don’t cooperate, and we experience a flare in pain and other symptoms.

So how can you really help your loved one or friend have an enjoyable holiday season? Here are eight ways:

1. Ask your chronically ill friend or family member how you can help. 

That’s right, good old-fashioned help. People who are chronically ill can struggle with completing basic tasks, and during the holidays, those tasks increase exponentially. The best gift you can give to someone who is sick is the gift of assistance. Stop by and vacuum, drop off a ready-made meal or do a few loads of laundry. Offer to take a carpool shift for the kids or pick up some groceries.

2. Send those invites even if you don’t think we can come. 

As I mentioned earlier, feeling left out is incredibly difficult. Sending us an invite and letting us know there is no expectation of our attendance, makes us still feel included.

3. Remember that financial hardship often accompanies families affected by chronic illness. 

In a lot of circles, gift-giving has gotten completely out of hand. While everyone should be free to give a gift to anyone they like, please don’t take it personally if your chronically ill friend or family member can’t give a gift or their gift is much more moderate than what you give.

During a dinner, a pot-luck or another situation where hostess gifts are often given, let your friend or family member know that you would be happy to have them come without feeling obligated to bring anything — their presence is gift enough.

4. Understand we’re not being rude if we show up late or have to leave early. 

Some people may feel slighted when their chronically ill friend or family member has to duck out early. While those feelings are understandable, please know it has nothing to do with you or your event.

On top of the usual challenges every person deals with on a daily basis, those of us with chronic pain and illness often can’t physically or emotionally tolerate the entirety of the event. Each diagnosis brings its own challenges, and despite the best planning we do, we often can’t be there on time. Flares in symptoms and pain can occur at anytime, and it can set us back while we try to manage them. Please be understanding and reassure us it’s OK.

5. Please don’t criticize or critique our current treatment plan. 

While many of you are coming from a good place, please leave your opinions about how we manage our chronic illness to yourself. Chances are we have heard of the latest therapy, herb, medication and guru. If you have a genuine interest in how we are managing the disease and what we do for it, feel free to ask, but please keep in mind that every case and situation is different.

If you have ideas or suggestions, shoot us an email or pick up the phone at a later time, but please don’t push anything on us at a holiday event. The truth is with the internet and groups on social media, those of us who are chronically ill are some of the most well-informed individuals out there, sometimes even more so than our health professionals. If we’ve made it to the gathering, the last thing we want to do is talk about our health. 

6. Ask us how you can help make it easier or more comfortable to attend your gathering.

Often we decline an invitation because we know the house or venue lacks comfortable seating or has accessibility issues. Some of us are reluctant to ask for minor accommodations because we know how much work it takes for you to host a gathering, and we prefer not to add to your list of things to do. And for others, we often don’t want to draw attention to our illness or disability, so we don’t advocate for ourselves. If we seem reluctant to attend, or decline, ask us if there’s anything you can do to help make us more comfortable. Bringing out some extra pillows, allowing us to lie down in a quiet room if needed or moving furniture so a wheelchair or other assistive devices can navigate easier are some of the simple things you can do to help.

7. Bring the holidays to us.

If we’re struggling and can’t attend a gathering, make special plans with us. Stop by our home with hot chocolate and cookies or grab some take-out and watch a movie with us. For those in the hospital, small decorations, ugly sweaters and gifts are a great way to boost our spirits. 

8. Consider donating to a charity in honor of your chronically ill family member or friend.

In addition to or in lieu of receiving a gift, this is one of the most meaningful things you can do to show support. Ask which charity best serves and supports their specific chronic illness community, then contribute in the name of the chronically ill person in your life. I can attest to the fact that opening up my mailbox and seeing a letter stating someone donated in my honor makes me feel loved and supported.

While I’ve just discussed a few ways how you can support a family member during the holidays, I want to note that once the dishes are done, Christmas lights, menorahs, snowmen and other symbols of the holidays are packed away until next year, those of us who are chronically ill are still here. And like the challenges we face during the holidays, those continue year round for us. 

Being helpful and inclusive all year is the ultimate gift you can give to the chronically ill.

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Mom looking at her baby in a NICU isolette

Six Sticks of Butter

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You can go into your kitchen, open the refrigerator, remove a few sticks of butter and place them in the palms of your hands.

That’s what it feels like to hold a 1-pound, 8-ounce baby. The equivalent of six small sticks of butter.

Mom looking at her baby in a NICU isolette

You only have a fleeting second of it, when a nurse instructs you to cup your hands inside the isolette just inches from the bed and gently lifts a tiny baby into them as she quickly changes out the bedding. The whole exchange takes place in less than a minute, and she’s gone again, the lid shut, the cover draped and you’re peeking under a corner of it through a thick plastic wall at your daughter, praying.

She will be a month old before you are allowed to hold her.

Mom holding her baby in the NICU

She’s chasing a little boy and girl at story time, weaving in and out of the shelves of books, her raspy, high-pitched giggle floating across the room.

She is much smaller than them. We are talking, the moms, about ages. Both of their children were born in the month she was due. “February,” they say.

“November,” I reply.

And there they come, the questions. Because she’s so small. Smaller than the 7-month-old who crawls towards us. Smaller than the 1-year-old toddling after them.

I tell her story.

I wave my hand. “But she’s doing wonderfully now.”

I lie in bed later and think of my hands.

Hands that reached for her from an operating table when they cut her from my womb 15 weeks too soon.

Hands that are wrinkled, damaged and dry at 29 from all the sterile scrubbing to place one single finger on my baby.

Hands that trembled as I dialed the number to my husband’s office to tell him 30 days after she was born, they finally, finally let me hold her.

Hands that held a book as I read aloud to her about a little girl and a secret garden over the shaking vibrations of an oscillating ventilator.

Hands that clung to my husband’s as a surgeon took a scalpel to her heart.

Hands that traced the outline of her face on my computer screen in the dead of night as I shook myself awake again to pump.

Hands that wiped tears from my eyes for 156 nights as I walked out of a hospital and left her behind again and again and again.

Baby holding parent's finger in NICU isolette

Hands I balled into fists as I took deep breaths to steady myself and prepared to put a feeding tube down on my own.

Hands that held tightly to her medical team in deepest gratitude as we took her home.

Hands that dropped a dish as apnea monitor alarms rang out to say she wasn’t breathing.

Hands that stretched her body over a ball and willed her to use her fragile, broken bones.

Hands that let her go in the direction of her daddy as she took her first steps.

Hands that grasp her little one in mine and remind her to use her library voice as she puts a finger to her lips and whispers “Shhh!” back at me.

Hands that casually wave when I express how far she has come, how strong she is when asked by an acquaintance at story time.

The author holding her daughter, reading a book together on a blanket in a park

They get the short version, the one punctuated with numbers and gratitude that fits in the space of the conversation. She was so small, and her story is so big. She was so sick, and her fight was so strong.

I am ever changed.

This is a story with a beautiful ending. We are lucky to be in its cast of characters.

Follow this journey on Kayle Aimee Writes.

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To President-Elect Trump, From the Mother of a Chronically Ill Daughter

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Dear President-Elect Trump,

Hi, we’ve not been properly introduced. I’m Darcy Daniels from Massachusetts. Full disclosure, I didn’t vote for you, but I still want you to succeed because you’re my president, and it will be your face that represents me around the world. That’s the way American democracy works, and I’m a big believer in it.

You said in your victory speech on election night that you were going to be a president for all Americans, so I’m going to take you at your word, and I thought I’d write to you about one of your first initiatives.

“Obamacare.”

Or as I like to call it, the Affordable Care Act.

But first, I’d like to introduce you to my daughter, Wendy.

girl wearing a medal and giving a thumbs up

Cute, right?

She was born totally healthy, but she contracted a bacteria called E. coli that did irreversible damage to her body. It resulted in a lot of complications, including multiple organ failure and a kidney transplant. She has spent a lot of time in the hospital, so much time, in fact, that she wrote a story about it that was turned into a cartoon. It’s now being shown to sick and scared kids when they come into the emergency department. She also competes in the American Transplant Games and the World Transplant Games. This girl, she’s a fighter. She’s tough. She gives back to her community. In short, she’s everything we want an American to be.

She is a real beneficiary of the Affordable Care Act. Now I know that you ran on a “repeal and replace” Obamacare platform, so I wanted to turn your attention to some of the features that are really important to people like me — people who have worked long and hard, who have insurance and who pay all the premiums and out-of-pocket expenses.

The first one is the provision that allows kids to stay on their parents’ insurance until they are 26. Now, I know you can understand this. You’ve got kids, and this allows everyone’s kids to go to college if they want to find a career path and still be able to be covered while they are figuring all of that out. This one really is a no-brainer, and I could be wrong, but I feel like most parents like this provision of the Affordable Care Act. We want our kids safe while they’re working to become responsible citizens because responsible citizens pay taxes, and that’s what keeps the government working.

The second is an important one to parents like me who have a kid with chronic illness. This provision is that children under 19 years of age can no longer be classified as having “pre-existing conditions.” This allows me to keep my insurance or change jobs and get new insurance without having to worry whether or not anyone will cover me because my kid happens to go in the hospital a lot, which she does. This is the one that causes me to lose sleep at night because if this goes away, it will be harder and harder for us to get health insurance, and it’s something we will really need.

The third provision is the removal of the cap on the lifetime insurance that companies are willing to pay for. Because here’s the thing, Wendy started early in her life with medical expenses and through no fault of her own. She will hit that lifetime cap way before any of her peers will. Then where will she be? Who will be able to pay for the constant medical care she will need throughout her life?

As a parent of a chronically ill kid, I’m constantly worried — worried she will be sick, worried I won’t be able to take care of all of her needs, worried I will have to get creative with finances so I can pay for her medications and medical supplies that aren’t covered by insurance. I don’t want to worry about health insurance too. I just want to know that I can keep it. I’m totally fine with paying for it; I’m not asking for a hand out. We work hard and know that insurance isn’t cheap.

But please, don’t take these provisions away from the Affordable Care Act, or whatever it is that you’re going to repackage it as when you “repeal and replace.”

You’re in charge of a lot of citizens now, including the vulnerable ones, and there isn’t much more vulnerable in this world than a chronically ill child.

Thanks for listening, Mr. President-Elect.

Sincerely,

Darcy Daniels

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To Anyone Whose Birthday Is a Painful Reminder of Their Illness

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You close your eyes the night before with butterflies in your stomach, knowing that when you wake in the morning it will be the day you’ve waited for all year. It’s your birthday. It’s one of the only days that the sound of your alarm clock doesn’t make you cringe and call out for “five more minutes.” You get dressed and put on an outfit that makes you feel good, and are greeted with hugs and kisses from your parents who shower you with messages of happy birthday. Perhaps you’re treated to your favorite breakfast, or look forward to going out to your restaurant of choice for dinner.

You get to school or to work with a smile on your face and your day is filled with hugs and kisses and well wishes. Your phone is constantly going off with text messages, tweets, Instagram posts and phone calls from people reminding you of how loved and appreciated you are. As the day winds down you can’t help but feel a little bit sad that your day is coming to an end, but you gather with friends and family around your favorite flavor of cupcakes or cake and smile as they sing happy birthday to you. You close your eyes and quietly whisper to yourself a wish to be fulfilled in the days to come, and then you blow out your candles making sure to tell no one so it will come true.

When I was 9 I wished for an American Girl doll, when I was 12 I wished for a solo in dance, when I was 14 I wished for my crush to like me back, when I was 18 I wished for an acceptance to my dream university, and now on my 22nd birthday, I wished to be anywhere but here.

Change is inevitable; as we grow so will our opinions and views on life. However, when you’re thrown into the world of living with a chronic illness things change in ways that you wish they didn’t — like my birthday. I truthfully have never been someone who loved attention, I’m an introvert and quite shy by nature, I was the kid that got so embarrassed she would cry when people sang me happy birthday. I never in my wildest dreams would have imagined that at 22, there would still be tears as I blew out my candles.

My diseases have changed the way that I perceive many things in my life, and it’s made me realize my values and morals and helped me appreciate the little things. As I grew, my birthday no longer became a day of receiving gifts and attention, but a day to be reminded of how loved and appreciated I am by those in my life and a day to celebrate my growth and progress in the past 365 days. Now, my birthday is a bitter reminder of where I could be and where I am not; where there used to be happiness and celebration is now replaced with emptiness and guilt.

Before I fell asleep I made sure to turn my phone on silent so I would sleep through the phone calls that would come in the morning; the phone calls that never came. I truthfully cried more tears on that day than I have cried in a very, very long time. I received heartfelt messages and gestures from people I love dearly, and people I didn’t realize I meant so much to. But I was met with disappointment when I got shorthanded messages, or no messages at all from people who meant so much to me. I buried my head under my blankets, armed myself with tissues, and tried to sleep the day away so I didn’t have to “feel.” I avoided looking at social media outlets — I felt like a failure.

Here I am at 22 years old, celebrating 8,030 days on this Earth, achieving nothing that I had ever dreamed for myself. I am not in school, studying to be a nurse. I am not a nurse, caring for my patients. I am not working, making a living and broadening my experiences. I am merely existing at this point, and dreaming of where I wanted to be. I tried, I tried so hard to make something of my day that would make me happy but when I realized I couldn’t even form a list of friends I wanted to celebrate with, I simply couldn’t bear it. I desperately wanted to be overwhelmed with school work, or stressed with upcoming midterms. I wanted to feel loved, appreciated, and celebrated by my peers. Instead I mourned and grieved where I was supposed to be, and tried to accept where I was.

That day I wrote myself a letter, a letter that I won’t open until my 23rd birthday in another year. Reminding myself that I create my own timeline, society doesn’t get to do that for me and it doesn’t get to do that for you either. The only thing that stands between me and self-acceptance is society; the pressures of where I should be, who I should be, what I should be doing drown out what my heart is telling me. There is no statute of limitations on our dreams or goals, and our birthdays aren’t symbols of that. Our days are already often filled with self-doubt, pain, depression and frustration, but it took me 22 years to realize there is always something good in those days — even in the ones where I don’t wait to get out of bed.

In my letter I reminded myself that my birthday is not a day to scold myself or grieve for what I could have had, and where I should have been. It’s a day to celebrate my existence, another year that I made it through hardships and obstacles I didn’t think I would make it through. It’s a day to create new goals, and find ways to attain the ones I couldn’t. It’s a day to be grateful that I bet the odds, that I watched 365 sun rises and sun sets. It’s a reminder that next year if I find myself in the same mindset that I immediately switch my mindset to celebration not degradation.

So if you find yourself stumbling upon this article on your birthday or you find yourself feeling as I did on my birthday, then listen up: at the end of the day I’m not doing all that I dreamed of doing at 22, and you may not be doing what you dreamed you would be doing at this age but that does not change how grateful I am to be here, or how grateful I am that you’re here. Here we are, 365 days stronger, 365 days wiser, and 365 victories simply because we got through each day. Even if you don’t believe it, there is someone out there celebrating and appreciating your existence. When we’re standing toe-to-toe with reality, we can do one of two things; we can break and become undone at where we should be, or we can celebrate all the growth that resulted from the hardship we’ve endured all year.

Things have changed as I’ve grown, but one thing that has remained the same is that I am hopeful; hopeful for a better tomorrow, a kinder heart, more love in my life, and attainable ambitions. People may not always understand the way you feel, and may not always say the right things, but I promise you that your existence and growth over this last year is appreciated, it is important, and it is celebrated.

In each day there is something to celebrate; some days it can be as simplistic as getting out of bed but other days it can be a celebration of great magnitude. Birthdays are just that; they are no longer a symbol of where you were versus where you are and wanted to be, but a celebration of your mere existence. I ended my day surrounded by my family, blowing out the candles atop of the cake I couldn’t eat… and although I can’t tell you, I’m confident that you know what I wished for this year.

Follow this journey on #SimplySabrina.

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When I Feel Like I'm Watching the World Go By While I'm Chronically Sick

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I was watching one of my favorite films today, “Half Light” with Demi Moore. It’s a romantic thriller set around a lighthouse. I won’t tell you much more because you really have to watch it if you haven’t already. Well, it got me thinking about:

1. How romantic the Welsh coast looked and the village where it is set.
2. I would really like to holiday there.
3. How nice it would be to be able to walk to the very top of a lighthouse, look at the view, with a gorgeous man by my side… without collapsing and having the paramedics come and rescue me half way up the bloody lighthouse!

They would have to rename the film “Half Dead!”

Anyway, I also thought about how isolated it must be on the lighthouse, and how the lighthouse keepers must have felt, watching out to sea all day, all alone, only getting to see people when they did their weekly shopping. In fact, that’s exactly how I feel — well almost, just no sea or rocks or ships… not right outside my window, anyway, that would be far more interesting.

We the chronically sick may feel like we are looking from the outside in most of our lives. We watch the world go by through windows, the internet or from the sidelines of parties, like wallflowers, because we came but have no energy to actually party.

It is so hard feeling like life is passing you by, hearing of how our friends are doing this and that and saying, “Ah you should have come, it was ace” — yep, and you reminding me I didn’t is ace, too.

My hubby makes lots of jokes about me and my “comfy chair,” like on a trip to the beach he said, “Ah, best be getting back, you’ll be missing your chair” or when I mentioned how nice it would be to live in the house that looked onto the beach: “Yes, then all you would need to do is wheel your chair down to the sea and sit with your laptop.”

Now I know he was joking, but behind the joke I feel there is a tiny bit of feeling that I sit in my chair all day every day (which I don’t, only on bad days, which OK, outweigh the good at the moment ) on purpose.

I got to thinking, I suppose my comfy chair is my lighthouse.

I look through the window most days, watch the passing dogs taking their owners for walks, the mail person nearly knocking said owner over on their motorbike.

I watch the birds come and go to the birdbath, which I monitor on a daily basis, like a good lighthouse keeper checking his… whatever he checks.

Then once maybe twice, I jump in my boat, well the bus, and go to the town to do a food shop.

Now this for me, the chronically sick one, is where I may socialize for the time, perhaps a coffee with a friend, a quick conversation with the shopkeeper.

Then I jump back in my boat… yes we have already established it’s a bus… use your imagination.

When I jump out of the boat, the tide is in and I have to climb the rocks back to my lighthouse.

When I carry shopping and try to walk it feels just like trying to walk against a current of water up to my waist, and the hill (OK, slope) up to my house may well be the rocky mountains up to my lighthouse.

So when my hubby comes home and says as he always does, “How have you been today?” I will reply, “Today I have been a lighthouse keeper!”

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