What We Do Each Day After Our Daughter’s Biliary Atresia Diagnosis

318
318
1
Gabbie's daughter in a dress
Gabbie’s daughter.

A year ago I was on maternity leave with my new baby girl. She was three weeks old. I was officially a mom of three. I would soon return to my full-time job in law enforcement. Life was good. Happy marriage. Beautiful children. Nice house. A dog. Two trucks and a car. We were living the “American Dream.” I had no way of knowing then, but my life was about to change in a big way.

Fast forward to three months later. I get a call at work. The baby had some labs drawn and some of the results might be abnormal. They need to us to come into the office. We go into the pediatrician’s office the next day, and told her liver levels are high, her bilirubin is elevated and her spleen is enlarged. What? They tell us that we need to take her to the children’s hospital. Now.

We get to the hospital and they admit her for observation. And the wait begins. Over the course of the next week, we meet doctors, nurses, surgeons. She undergoes CT scans, more blood work, a liver biopsy. The diagnosis? We find out that she suffers from a rare liver disease. Our sweet baby girl. Oh God, oh God, oh God. This can’t be happening.

But it is happening. Biliary atresia. It occurs in 1 of every 10,000 infants. It’s a rare disease of the liver in which the bile ducts inside or outside the liver don’t have normal openings, or don’t exist at all. Because of this, bile does not flow properly and remains in the liver which causes cirrhosis. It is the leading causes of pediatric liver transplants. There is no cure.

The next day we release our tiny baby girl into the arms of surgeons for a major surgical procedure called a Kasai. Her bile ducts were removed and a piece of her small intestine was attached to her liver in an attempt to restore bile flow and prevent further cirrhosis. The ideal time to have that surgery is 12 weeks and under. She was 14 weeks at the diagnosis. She comes out of the surgery well, but we’re told there is still a chance it won’t be successful in the long run.

And just like that, two weeks after our world fell apart, we’re home. Shell shocked. Every cough, sniffle, sneeze, sends us into a panic attack. We have doctor appointments twice a month to monitor her liver function. Even a cold could be life threatening. Over the next few months she’s hospitalized twice for an infection called cholangitis. Sleepless nights. Depression. Anxiety. We’re on an emotional roller coaster.

Next come the monthly doctor visits with the gastroenterologist. Monthly visits turn into biweekly visits. Biweekly visits turn to weekly. Finally, we get the news the Kasai has failed. Our daughter needs a liver transplant. Without one, she’ll die. We break down. We pray. We rage. Why? Why are you doing this to us? Please, please! Let us have her. How do we come to terms with something like that — knowing there is a chance our child may not have a chance to grow up? That she may be taken from us before she even has a chance to live?

Finally, nearly 10 months later, our life is almost “normal” again. Our daughter just celebrated her first birthday. We still haven’t come to terms with it yet, and I don’t think we ever will.

But I can tell you what we do.

We fight and we love. As hard as we can. Every. Single. Day. We take every single moment and make it special. We spend as much time together as we possibly can. We hold onto our faith. We celebrate every day.

Most importantly, we live.

Follow this journey on Southern Moca Mommy

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? Check out our Submit a Story page for more about our submission guidelines.

318
318
1

RELATED VIDEOS

JOIN THE CONVERSATION

Mom Responds to Nasty Note Left After Parking in a Handicapped Spot

3k
3k
19

A routine family outing to Walmart took a sour turn after a nasty note was placed on the dashboard of a mother of two, Nikki Waller’s, car. The note, which reads “Reserved parking (expletive). Did your welfare check come today?” was left by an anonymous passerby who saw Waller park in a handicapped space.

Waller, who is legally entitled to park is such spaces, was granted a handicapped placard by the state of Pennsylvania. However, the placard is not for Waller, it is for her 7-year-old son, who has juvenile arthritis with myalgia and hypermobility disorder –– conditions which can make walking difficult and painful.

Saddened by the note’s ignorance, Waller took to Facebook to post a message of her own.

Her post reads:

So I went to Belle Vernon Walmart last night to get the boys a quick haircut. I came out to find this on my car. Those of you who know me know that it really angers me when people without handicap signs park in those spaces. So seeing that I was parked legally this was a little funny to me. But then I became sad. I am not sad for myself or for my son. I am sad for you…the author of this nice note. There are two words to describe you. The first is ignorance. I am saddened by the fact that you obviously saw my children and I pull into one of four empty handicap spaces, saw our ages, and made judgements. Unfortunately, it is the youngest member of our group who requires this space. I do not expect you to know all of his medical diagnoses, to pull up his pant legs to see the braces he wears on his legs, or to know that his liver is going to shit because of medication he needs every day. But I would expect you, as an adult, to think outside the box. You do not have to be 90 and have a walker to obtain handicap parking. The second word I would use to describe you is coward. You had the guts to leave this note for me after I left my car but not enough to question me about my reason for parking in that space. Had you even had the guts to approach me with a rude comment I would have been happy to educate you. Instead, you hid like a coward, making ignorant judgments. So your note did not affect me in the way you thought it would. It only made me feel sorry for you and people like you.

“Just because you see a woman and two kids get out of her car doesn’t mean they don’t need that sign,” Waller told Pittsburgh’s Action News 4.

According to the Centers for Disease Control and Prevention (CDC), more than half of America’s adult population live with a chronic health condition, many of whom would benefit from having a placard. Of those 117 million Americans living with a chronic condition, 53 million have arthritis, just like Waller’s son, Alex.

“I thought it was rude for people to do that because other people have problems too and you don’t see it,” Alex Waller said to Pittsburgh’s Action News 4.

While the signs of arthritis may not be visible from across a parking lot, its ability to limit mobility is real. A CDC study from 2014 found that 22 million Americans are limited in their regular activities due to arthritis pain.

“There are people with invisible diseases and illnesses who do need handicap parking. Just because 20 feet away they don’t look like they do they may have something going on that you don’t even know about,” Waller told the news station.

3k
3k
19
JOIN THE CONVERSATION

10 Things I Need My Friends and Family to Know About Life With Multiple Illnesses

141
141
2

On June 30, 2013, my life changed. I woke up with an excruciating pain in my abdomen. I ran to my parents’ bedroom gasping, “I need to go to the hospital!” Before this happened, I had little whispers for a few years prior that indicated maybe something was up with my insides, but those whispers turned into a scream when my ovary twisted two times to alert me that I had a 14-centimeter cystic mass taking up most of my pelvic area.

After spending a day in the hospital trying to figure out what was going on, a well-humored gynecologist told me I would need to have emergency surgery, but not to worry as this procedure is very common and straightforward. So after my initial panic faded, I had an optimistic outlook: Maybe I would even feel better after this surgery! Maybe I wouldn’t always have to undo my fly after meals because of weird discomfort. Things would be OK.

I never fully recovered from that surgery, and I still don’t know why. The gynecologist that did my surgery told me I had endometriosis, but if I started the birth control pill right away, everything would be fine. But everything was not fine. And almost immediately after surgery I started having digestive problems. This eventually evolved into chronic discomfort all over my body, painful periods and ovulation, bouts of anxiety, depression and paranoia, migraines, and what felt like a million other unrelated symptoms at that time.

Fast forward almost three years, 11 conventional healthcare practitioners, 10 complementary practitioners, thousands of dollars and hours, and here I am with a hypersensitive nervous system, chronic hypoglycemia, a hurting reproductive and digestive system, a very confused immune system and a body that can only tolerate applesauce, pureed squash, avocados, bananas, and a hypoallergenic meal replacement.

I am not sharing my story because I want people to feel bad for me. I really don’t. In fact, my life is really great outside of my struggling body. I live an extraordinarily privileged life and I don’t want to take that for granted. I am sharing my story for a few reasons: 1. Yes, sh*t happens, but that sh*t can be redeemed. 2. There are a lot of people who suffer from invisible illnesses (people you probably see every day), and I want to bring awareness to that fact. 3. I think being honest about my struggle in this way may bring some healing to me. 4. Maybe, just maybe, someone who reads this will relate to my experience and feel a little less alone. 5. So that I can look back at this and remember what is important to me when I am having a hard time. 6. Everyone has a story and I think they should all be shared. 7. I have a few things I want my friends and family to know about my life with chronic illness.

*My thoughts about things change from time to time, so maybe one day in the future these won’t be the things I want you to know about my life with chronic illness, but until then..

1. I am trying.

Sometimes I get this feeling that people assume that because I am not actually getting better, I must not be trying. I have never stopped trying. I have put more time and money into taking care of my body than I ever thought imaginable. But. Sometimes my body needs a break from trying things. Sometimes my spirit needs a break from trying things. But I trust that these breaks are doing me more good than if I kept pushing when my body is telling me no.

2. Doctors don’t always know everything.

Wouldn’t it be wonderful if doctors weren’t human and actually did know everything? But they don’t. I always have people asking me, “What do the doctors say?” And when I say that they don’t say much, or that they haven’t been able to find anything wrong, people might say things like, “Oh, well why don’t you just start eating normally then?” or “Well, if they can’t find anything wrong it must be all in your head.” I think there are more loving ways to support someone who hasn’t been able to eat real food for almost a year.

3. I would eat that pizza if I could.

So trust me when I say I can’t and don’t push it.

4. I might not ever get better.

I feel that most people in my life expect me to always be getting better, especially if they don’t know me very well. I may have seen them a month ago and they ask me if I am feeling any better and my answer is always, “Not really.” Every time I say it, I feel like I am letting someone down or as if I need to apologize for still being sick. The usual response to me saying “Not really” is “Well, you look really good!” I appreciate that you think I look mighty fine, but the fact that my illness is invisible to you somehow doesn’t make me feel any better. I do realize, however, that these comments come from either a place of really caring for me or just not being sure what to say, so I get over it really quick. The truth is, I wish people would be OK with me not getting better, because then I wouldn’t feel the pressure to be better. Help me be OK with where I am at.

5. My life isn’t what I thought it would be and I am OK with that. Really.

For the first 21 years of my life I had dreams of becoming a teacher and having lots of kids. I thought that was what would bring me fulfillment in life. I am currently in a place where I don’t know if I’ll ever be well enough to finish my education degree. I also don’t know if I will ever be able to have children. Everything is pretty up in the air. But I am happy with what I am doing with my life. I have the most loving husband to share my life with. I have amazing family and friends. I enjoy my work as a substitute educational assistant, and I have a God who loves me. Music exists. You don’t have to feel sad that I might not ever be a teacher. Or that I may not ever have kids. Yeah, these aren’t ideal situations. But I don’t need them to feel like my life has value.

6. I can have joy every day in my life with my illness.

My life isn’t my illness. It’s far more than that. And to be honest, I do have joy every day in my life. Even when I am having a hard day, the hardness of that day isn’t everlasting. I laugh constantly. I cry tears of happiness sometimes. I look forward to things. My life isn’t over.

7. I am not the fragile person you might think I am.

I am strong. Stronger than I ever was.

8. I wouldn’t want to go back to who I was before I got sick.

This used to be so tempting to me. I would daydream about how awesome things were before I got sick. But truthfully, things are a lot better now. Sure, I can’t eat pizza or pie, but I am a much better person now. I am much more satisfied with my life. I know what is important and what isn’t. Life is simpler. I feel more capable of loving other people. Ultimately, my life has much more meaning than it did before.

9. I believe God has not abandoned me.

I have felt closer to God these past three years than I ever have. When I have days, or weeks, or months where things just seem to be getting worse no matter how hard I am trying to give my body a break and feed it the things it needs to get better, there comes a point when I realize this is all in God’s hands. When I am alone and in pain and feel like giving up, the most healing thing for me in that moment is imagining myself through God’s eyes and feeling how much he loves me. If it weren’t for my confidence in God’s plan for me, I don’t know where I would be today.

10. All I want you to do for me is pray and hang out.

I think most people like to fix things that are broken. But I do not want you to fix me. I just want to have you in my life. If you still want to fix me, pray for me. Nothing could brighten my day more than if you say you are praying for me. Pray that I have strength, faith and healing. Also pray that one day I will be able to eat pie. Because that would be awesome.

Follow this journey on Life in Between.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

141
141
2
JOIN THE CONVERSATION

The Questions My Rare Diagnosis Papers Begged Me to Ask

120
120
3

I reach into my purse and pull out a piece of paper. It’s a remnant from my doctor’s appointment yesterday, my most recent check-up. White, crisp data. Simple numbers distributed on a page in an orderly fashion. It is so clear to me these numbers and letters don’t possess feelings. My name is at the top, my birthdate and age: 34 years. Thirty-four years. I feel like I’ve lived several lifetimes in these years ­— in the last five alone. It’s dizzying. I notice sorrow creep into my belly. I sigh.

It’s just a piece of inked paper, but for me it is a constellation of cycles of diagnosis and recovery. What’s in a diagnosis? How is a diagnosis acted upon by time, by five years of time?

It’s about to be solstice, the day with the least amount of sunlight, and most darkness. I’ve allowed in both the darkness and the light, because it’s all true. To try to deny any part would be futile. I believe it’s all part of me, stardust, the universe, trying to experience itself in this unique embodied form, in this lifetime, in this human body —this seemingly broken body that I’ve painstakingly put back together again, one tear and laugh at a time. The white paper says: today’s clinical visit summary.

It’s about to be the new year. A new year, as if things change in a day. I guess sometimes they do. On New Years five years ago I was flying to India, intuitively knowing I had to go to shift my life. I was seeking and finding no answers here. So what do privileged people from Boulder do when that happens? Go to India. Go somewhere else to find yourself, to find the part of yourself you already know to be true, but you’re terrified about accepting, so you give yourself a glamorous and culturally-appropriated intervention. Thus, I went to India, because I had an intuitive hit from my future self that I needed help to shift. And I sat in temples and meditated and frivolously stated that I was open to whatever help I would receive. “I’m open.” Just help. Guess I should have been more specific. I started feeling ill two weeks later on the flight home. The white paper says: trip to India is seemingly unrelated.

Now, it’s about to be my birthday — 35. I feel like a crone. I’m not trying to be funny here; archetypically I feel like a crone. Metaphorically, I’ve spent the last five years contracted in winter, and am just now crawling out to feel the rays of sunshine pierce my inner seed. I’ve been under a blanket of snow while my purpose has been working on me. On the outside it looks like I’ve been sparkling, like I’m the model patient, like I’ve triumphed over incredible illness. True. In my past life as an actress I painted on the face; as a patient, I added the smile.

Underneath the surface I went from professional seeker of the silver lining to professional griever. 

I’ve grieved, and grieved, and grieved. I’ve lost, and let go: of my past I didn’t want, of my past I didn’t get, of my future that can’t be my future anymore, of my future that will be, but I’m scared to own. The white paper says: next check-up in three months.

So on this upcoming birthday, as with every birthday, I will have gratitude to be taking another breath, because it is precious. And I will have fear, as with every birthday, of what I will become in this year. Both the potential for another shattering, and the potential for stepping more fully into my expansion. I feel exhausted by the freedom of choice and responsibility that comes with being authentically human. And my specific version of human is to burn brightly, but not burn out, or more accurately, to not burn out again. So what will I become this year as I continue to step into my purpose?

Let’s not forget this piece of paper with scattered data in my hand. This paper tells the tale, of diagnosis, of feeling fragmented, of it not being fair, of slow improvement yet continual destruction over time. It says autoimmune hepatitis, pancytopenia, enlarged spleen. It says to continue Prograf. I feel my doctor’s thoughts pour through the page as he typed the numbers, “You haven’t let your liver disease define you. That’s as rare as your disorder.” There’s the prescription he stapled to the back for a new blood test to see the level of my liver damage. The word “cirrhosis” bleeds from the page and takes flight in the air, and my liver increases its weight in my abdomen.

In the unspoken white of this paper are five years of heartache, pain, not being seen, acceptance, grasping, identity, new identity, discovery, joy. I don’t want to be sick. But I don’t know how to be healthy.

And who am I now? 

Of solstices, New Years and birthdays, of that which dies away and creates new space. Of slowing down, feeling the anxious beating of my heart in my chest at night, because I don’t have time to waste. I could die at any moment. And then there’s another breath. Follow it.

I wonder, how does the seed know about gravity, or how to find the sun, or which way is up? How does it know where to put down roots and where to grow, or where to hold true or expand?

And I wonder, how do I write about this experience, own my experience, and continue to live my experience in a way that can inspire others who are in their own crisis?

I don’t know. I guess I just continue to be.

So I neatly fold the prescription and the piece of paper, and place it delicately in my purse, with reverence, because it holds the last five years of my history. And I find my hand on my heart sensing for my next breath. My cells, my family, my liver, my relationships, the earth beneath my feet, the stars over my head, the seed of my purpose — it all holds my history.

Lead photo source: Thinkstock Images

Follow this journey on Zina Mercil

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

120
120
3
JOIN THE CONVERSATION

When I'm Asked 'What Do You Do?' as a Woman With a Chronic Illness

968
968
10

“What do you do?” A simple question that I find extremely complicated to answer these days. I can tell you what I have done: traveled by raft down wilderness rivers, rock climbed, backpacked through the Rockies, and mountain biked down ski slopes. I can explain my undergraduate and my master’s degrees, tell you about traveling to all 50 states and 21 countries. If you want to know about my career, I can tell you I was a naturalist, a rainforest ecologist, a paleontologist and a science teacher.

It doesn’t take long for the listener to notice that the verbs and titles I use are all in past tense. Why? What I do in the present tense makes a poor conversation starter, especially if you don’t know what I was. Right now, what I do is take care of my body, manage my health well enough to lovingly care for and nurture my two 9-year-old sons. I’m learning to care for my body as if it is my third child that must get to bed on time or she will fall asleep at the restaurant, or be unable to walk to the car from the furthest corner of the zoo if I ignore when she cries “My feet hurt, can we please stop walking!” I take my body to the pool to ensure it gets exercise to preserve my strength and range of motion of body parts. Also, a great deal of my time is spent preparing nutritious food I can tolerate, that don’t exacerbate inflammation, and that taste great, since eating is already a chore due to chronic abdominal pain and lack of an appetite. Like feeding a picky toddler, I have to delicately coax myself to get in enough calories to live.  

Why? They are probably wondering why a 38-year-old athletic-looking woman who did so many amazing things spends most of her time taking care of herself as if she is a child? Because starting around the time I was 14, I would find myself using every Ace bandage I could find to wrap my aching legs and arms, figuring I was sore from track practice. At 15, my mom found me sobbing in my upstairs bedroom with my pants around my ankles before school, unable to bend down and pull them up because the inflammation in my hips was so severe. At 16, I would wake up with fevers of 103 degrees Fahrenheit screaming in hallucinatory agony as my shoulder would be shoved out of its socket, causing the joint to be hot, bruised, useless and excruciating, then the next day completely fine. A few weeks later, the same thing would happen to the other shoulder, then a knee, a wrist, an ankle… 

Finally, two weeks before leaving for college and turning 18, a specialist gave my suffering a name:  rheumatoid arthritis. What I remember was feeling silly for being in so much pain from “arthritis.” I would soon learn to hate that arthritis was part of the name of my disease, because it allowed others to be dismissive of my suffering because they too had arthritis in their thumb, or think I was too young to have arthritis, confusing rheumatoid with osteoarthritis that is caused from aging.  

Over the next 20 years, I grew confident and skilled in my profession as a teacher, I got married, I adopted two sons, and the disease continued its ruthless attacks and destruction of my body. Each additional joint that succumbed to the rheumatoid forced me to make tough choices and sacrifices in order to have any hope of peace between me and my body. Then, it finally happened: I had used every single bargaining tool I was willing to sacrifice and I was still losing the war.

My rheumatologist and I were trying everything possible to slow down my free fall, yet rheumatoid continued to gain new territory despite our efforts. Defeated, I went to my principal and explained that I only knew how to teach 100 percent, but felt like I only had five percent to give, and I needed her to find someone to take care of my students for the rest of the year. The next day I had an appointment with my rheumatologist, who decided I need to be admitted to the hospital, where I spent eight days. It was from my hospital bed that I made the phone call to Social Security and asked to apply for disability. A word, a label, a concept that I had fought against valiantly for more than 20 years.  

I never got to go back in my classroom, and since then I have had to give up most of the verbs associated with who I was. I no longer climb, run, mountain bike, kayak or backpack. I no longer work as a naturalist, paleontologist or science teacher. I also am no longer a wife or a gardener, and I shy away from answering the question “What do you do? “

I am still a teacher, learning to teach through writing, and I am still fascinated by the science all around me. I am still a mother to two amazing sons, a sister, a daughter and a patient. What I do, now, is stay alive by making the maintenance of my body and management of my disease as much of a priority as the care of my sons. What I do is survive first, then find a way to be alive so the world can see that what I am and who am I is not depended on what I can or can no longer do.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

*Sign up for our Chronic Illness Newsletter*

968
968
10
JOIN THE CONVERSATION

To My Future Partner, Who I Hope Won't Leave Me Because of My Disease

334
334
8

Dear future partner,

We haven’t met yet, or maybe we have and time wasn’t ready. We need to talk. Now. Before I fall in love with you, before you fall in love with me.

Because I don’t want my disease, ankylosing spondylitis, to cause you to leave me.

Too often I see sad posts in online support communities for severe disease groups. Like this one:

“My spouse just asked for a divorce after 25 years of marriage. She said she could no longer handle being married to my condition. I work full time, I do chores, I am a great partner and parent. I just can’t hide when I’m having such bad pain. I feel so alone. Can someone share how they got through this? How can I be in another relationship if I know my disease could cause someone to leave?”

These posts wrench my stomach. I cry, “Another one?” And I have two reactions: hope and fear.

Hope. Hope that I’ll be one of the fortunate ones; that I’ll beat the odds and my marriage vows won’t turn into, “‘Til disability do we part.”

Fear. Fear that I will not find a partner to embrace me, disease included, for the rest of our lives. Fear that I’ll fall head over heels in love with someone who will look at me one day with eyes that can’t see past my disabilities, and give up on me.

Who will want me when I’ve been dumped? When my health will be worse and my market value has plummeted beyond repair?

Dear future partner,

I will push you away before I allow myself to trust that when you say “in sickness and in health,” you truly mean it. I am filled with self-doubt because I have no way to prove that you won’t leave me. Evidence shows that it is harder to maintain a relationship when one of us is sick with a lifelong disease or disability.

There is also evidence of miraculous love stories of two people overcoming impossible obstacles to be together. These stories deserve every praise that exists — but they are rare.

I want to be rare.

I am not like other people. I know I am amazing in a lot of ways, one being that I am a survivor. While I have no choice but to fight to survive (the essence of which defines my amazingness), it gives me the strength to believe that one day I will find someone who will fiercely and tenderly hold me from day one through infinity.

I’m fiercely independent. I’ve always taken pride in being self sufficient. I am stubborn to a fault. I’ve had to be — it’s a survival mechanism. You will tell me not to do things, but time and time again I will do them anyway, even when I agree with you that I shouldn’t. You will say, “I want to protect and preserve you so I have you for as long as possible.” Thank you for being selfish, in advance, because it could save my life one day — that is, if I listen to you.

But one of the most important things is for me to be selfish, too. While you are thinking I shouldn’t do this thing, I am thinking the reverse. What will life be in five, 10, 30 years if I look back and realize every decision was an effort to protect me from myself? I don’t want to simply survive, I want to live! What will carry me forward if I have taken no risks, if I haven’t pushed beyond the bubble of safety? Caged chickens deserve a glimpse outside their walls even if their legs are too weak to go far.

I’m sorry, partner, that after I do what I shouldn’t and I am in bed crying in pain, I will expect you to hold me. You won’t understand, but you’ll bite your tongue instead of saying, “Tsk, tsk, you should have listened to me.” You’ll let me cry until the neighbors think someone died. You’ll let my snot run all over your chest and you’ll tell me I am beautiful even if my eyes are so puffy I can’t see your face. You won’t understand, but love doesn’t require understanding to be unconditional.

I will need you more than you will be prepared to give. Our relationship will look different than our dreams. It may sometimes seem that you live alone, except then there’s me in the recliner while you wash dishes. You’ll feel more like a nurse or doctor sometimes, giving me shots, bathing me when I can’t do it myself, staying up all night when I’m afraid I will die if you’re not there to monitor me. I’ll often be sad or angry and you’ll have to figure out what to do to make me laugh again.

I will be needy. I won’t want to go to my doctor appointments alone. There will be nights I spend nine hours trying to fall asleep; you’ll wake up for work and I’ll be there looking at you, waiting to be held. When you come home you’ll find me crying on the kitchen floor because I dropped my favorite glass just trying to put it away.

Sex will involve more than making each other feel good. Our intimacy will include stretching my hips after intercourse and holding me when my back spasms. I can still feel really good, but we have to work harder at self-care and be more cautious than perhaps we’d like.

I will push myself to pursue activities with you even when they hurt me. I will encourage you to go for it, even when it is something I can’t do anymore and it hurts to watch from the sidelines. I will participate in your life to a fault and encourage you to go far, hoping that the freedom I give will substitute for the downfalls I can’t control. The reality is that a lot of my decisions will be navigated with a veil of hope covering my fear that you will leave me. I need you to understand this so you can stop me from pushing myself so hard, so you can tell me that you don’t need or want me to be anything more than I am.

All of this and more will overwhelm you. I will watch your poker face evolve over the years as you hide how hard it is to be in your shoes. I’ll see through it every time. I’ll know.

And I’ll wish I could take everything back: my needs, my desires, my sickness, and the fact that I am in love with you. I will feel I am ruining your life. I will feel I am burdening you with more than you can handle. Don’t let me. Please, tell me how much of a burden I am not. I will need your help reminding me that relationships aren’t about who gives more, but about why and how we give to each other.

Dear future partner,

The reason my disease is good for us is that it will force us to have a deeper relationship. We will have to communicate better to keep our relationship healthy — because of me. I’ll take credit for our need to be relationship perfectionists; I need to be able to take credit for something.

If you become my forever partner, it means I have no doubt whatsoever in your love for me. It means I can be all the parts of me with you all the time — the good, sad, goofy, angry, and painful parts — all of them. It means I have realized I am worthy of the fullness of life-giving love that makes a relationship whole.

Those of us who struggle the most know how much there is to lose, so we do a good job of holding on to what we have. We make the best partners, if only for that reason. When I allow myself to fall in love with you, I will be facing my biggest fear that you’ll get tired of taking care of me and realize you could have a better, more active, more fulfilling life without me. I only hope I am able to show you how much I love and appreciate you so you won’t forget how little I take you for granted.

Dearest future love of mine, don’t leave before we even begin. I have great things to offer despite this disease that tries to take my identity away, this disease that tries so hard to come between us. Help me defeat at least a small part of my handicap — my fear — by proving love can exist and survive beyond all that threatens to undo us. Find me, love me, be with me — until death parts us.

Follow this journey on Being Charis.

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

334
334
8
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.