Aleigha R

@aleigharankin | contributor
Aleigha R

Why I See My Severe Insomnia as a Blessing and a Curse

Dread is the feeling that hits as soon as about 9 or 10 p.m. rolls around. It is the sudden and heavy twisting of my stomach when my friends tell me they’re off to bed. Dread is the fact that tonight, like every night, I’ll be sitting alone in the dark with all of my issues and emotions I can so easily brush off during the day with a smile or a chipper conversation. Dread is the weight of the unknown; the loss, the grief, the pain and the utter silence of that person who – up until they started to notice my bones begin poking through my skin, the shine of my pale bald head or the dark purplish-black circles around my eyes – had said they were going to be there by my side, all the way through.It has been happening for a little over a year now: this whole not sleeping thing. I’m not talking about going to bed too late or tossing and turning through the night. I’m talking about pulling back to back all-nighters as if they were a normal occurrence. When I did sleep, I would rest for maybe three to four hours a night, and I say rest because that’s really what I was getting. Doctors confirmed I wasn’t even hitting REM sleep, thus waking up the next morning feeling just as, if not more, tired than the day before. I became so fatigued I was no longer able to remember even the littlest of things, like names or what my parents had asked me to pick up at the grocery store just minutes earlier. Other times I lost my car in the hospital parking garage, unable to remember where I had parked, sending me into a full-blown panic attack. Even more worrisome was I would lose my train of thought mid-sentence, having to have friends or people around me remind me of what I was just saying. Honestly, this made me feel like an “idiot” for both not remembering things and not being able to recall simple things such as dates, numbers and spelling. The real kicker is the way it messes with my head; making me feel disoriented, confused, and even a tad “insane” at times. I can’t tell you the amount of times I’ve been pulled in and out of hallucinations. Seeing one thing or really believing you are in a certain place and then, suddenly, snapping back to reality only to realize whatever you thought you saw was merely in your head. They are terrifyingly realistic. Sometimes I wake up screaming, other times as if the wind has been knocked out of me. One time I even had to call my friend to make sure she was alive and not dead as my hallucination had suggested. It’s like being trapped between two worlds but you keep on switching back and forth, back and forth, never truly aware of where you are until you are whisked off into another reality your brain has created. I’ve tried basically all the medications for sleep and sedation my insurance policy will cover, but they only seem to do nothing at all or give me some pretty terrible side effects ranging from uncontrollable crying to suicidal ideation. Currently, I’m taking twice the normal dose of one for an adult female. But there is also the fact I do some of my best thinking at night. The quiet isolation helps me to think a little bit more clearly, listen a bit more intently to God and write about what is pressing on my heart. A good percent of my best pieces have been, as my best friend would say, written at some ungodly hour. These are the good times: the times when I can devour the book suggestions my friends have given me or enjoy some Netflix all to myself. I find I enjoy the gentle company of the moon and the brilliant presence of the stars. How the low clouds blanket the hills and mountains or how the pitter-patter of the rain falling on the roof sounds as sweet as a lark’s song. And while this all sounds rather dreamy, there is also a painful, desperate and quite morbid side to staying up all hours. Every single day I wake up exhausted. I’m not really sure I could tell you what real restful sleep even feels like anymore. The hallucinations make it difficult to distinguish between what is reality and what is psychosis. It’s seeing the best friend you called your brother for all those years. Being able to talk to him, hug him, lie on the top of that car roof up at the top of that deserted mountain road, counting the shooting stars in the heat of a summer evening. And it’s violently snapping back to the real world where that friend you called brother, who called you a princess, who always broke our small town curfew so we could walk to the golf course and lie, laughing, all night in the cool, dewy grass, has been dead for over two years because he took his own life. It’s flashing back to the family member who backhanded me so hard I fell to the ground; the family member who wrapped both of his hands around my neck, feet dangling above the ground. Their face, red with rage, burned forever into my mind. It’s waking up screaming or hyperventilating because even a dreamlike version of that night still sends me straight into an uncontrollable panic attack. The night is both a welcoming home and a barren ghost town that will haunt me until my grave if I am not careful. But even in spite of all of this, I still see the severe insomnia I struggle with as both a blessing and as a curse. If you know anything about me by now, you should know I truly think your attitude can make a huge difference in the outcome or path of your outlook, life, disease(s). If it weren’t for my insomnia, how would I have my morning chats with  Emma , a friend battling mast cell disease halfway across the country? When would I have my quiet time, my creative time, my time that is just for me? I’m definitely not saying the insomnia isn’t absolutely dreadful, because it is, and it kind of makes me want to punch the s*@! out of something. I am just saying there are silver linings in every situation. You just need to look hard enough for them. We want to hear your story. Become a Mighty contributor here . Image via contributor

Aleigha R

Experiencing Long-term Sadness When Being Chronically Ill

I’m stuck in a hole and I don’t know how to get out. Rather, I’ve been stuck and I have tried almost everything to get out. No matter what I do or how hard I try, there is always this deep, dark, unique sadness that comes with life-altering, life-limiting illness. And it’s always there, regardless of how happy I am in the moment, or how much positivity I attempt to emit or how many people I try to surround myself with. It’s the sickness that makes you sad.It’s the sadness that makes you sick.It’s the never-ending downward spiral and it has one hell of a grip.It’s sick sad. Most times it’s just there underneath, lurking like some monster of the sea. Other times it’s the ocean itself; it’s surf overwhelming everything in its path and leaving its exhausted victims to be continually beat unto the shoreline. I guess the real issue for me, is that no one really seems to be talking much about it… and why would they? It hurts to talk and think about. No one wants to have to constantly consider the pain of another human being. But ignoring the fact that this type of suffering exists isn’t okay either. Ignorance hurts too. So let’s start talking about the deeper and more difficult emotions that come hand in hand with illness. I know I’m going to.

Aleigha R

The Ugly Truths of My Illnesses Shouldn’t Be Taboo

I haven’t written in, well, too long. I think it has been due to an assortment of reasons… The fact that my condition has and is progressing in a horrible sort of way. That I am too drained, too tired, too dead inside to do much of anything despite what the up-kept image reflects on my Instagram. The fact that it is a struggle for me to articulate my thoughts or keep up in a conversation leaving me feeling lost in the background until I end up retreating altogether. However I am, on the clear days, going to write anyway because I believe strongly that I deserve to be heard, that the battles I am fighting and the life I have been given need to be communicated so maybe one day I’ll get to live in a world that isn’t so disturbed by the sight of broken bodies and no longer shies away from the discomfort that comes with conversing about the ugly truths of illness. Because… Two years ago, a doctor told me my sudden pain and decreasing health was all in my head, but here I am still in very real pain, battling some very real illnesses. A year and a half ago, I lost some of the people I considered to be my closest friends because they could not understand the ailment that had stolen my once healthy body and continuously battered my overwhelmed and grieving mind or the horrific side effects that changed me forever. A year ago, I found myself screaming into the void that is our healthcare system to find help for my rare diseases with nothing but radio silence echoing back towards me. Six months ago, I sat at the Mayo Clinic excited for all the resources they could offer me, but instead I was greeted by a preoccupied doctor who jetted off to Florida in the midst of my stay. I left brokenhearted with a massive bill my family had to pay out-of-pocket. A few months ago, someone I trusted and loved told me I was faking. We haven’t spoken since. A week ago, I got called an attention-seeker for publicly taking the meds that allow me to function. I received the same sort of reaction for sharing my medical journey online. The other day, some of my own family members made fun of my short, fuzzy hair that is growing. Little did they know I had been losing sizable chunks, clogging the drain each time I showered before I made the decision to shave my head to raise money in honor of another little fighter who resides on the west side of my state. Ellie Walton is 3 years old, had 17 surgeries and has been through more than any toddler should ever have to. Last night I cried for hours to my mother because there are days when the pain of living the life I do seems never-ending and lonely. Because watching all of my friends graduate and move on into their lives with the gift of health was, for a minute, more than I could bear. I cried for my cyst-covered kidneys, my endless pain, the constant infections, insurance coverage denials, my weakening muscles, failing digestive system and lack of treatment. I cried because I am 22 and I peed my pants in public the other day due to my constant muscle spasms. I cried for my past life and my dreams that were lost with it, but I also cried for my future because what will I do? How will I support myself? Who will take care of me? I don’t want to live in a world that turns their heads from the lives that so many are forced to live. I shouldn’t be made to feel ashamed or less than or like a burden for needing help or talking about my struggles. Illness isn’t always smiles, life lessons and happy endings. It can also be full of humiliation, loss and hopelessness. It may never be “normal,” but it can be accepted because when it comes down to it — m y truth, even the ugly parts, shouldn’t be taboo. 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.

Aleigha R

What I Didn't Know About Being Diagnosed With a Life-Altering Disease

January 1 has always been a peppy and fun-filled day for me, full of laughter and hope as we make the transition into the new year. For as long as I can remember, it was a day spent with the people I held dear, formulating a rough sketch of what the next 365 days could possibly hold. New year, new me, right? But this year was a little different. I mean, I probably wouldn’t be writing this if it weren’t. This year, as I sit here and reminisce on a full year of being ill, I am alone, and there are tears that fall uncontrollably for the struggles, pain and loss that seemingly consumed 2015. Here’s the thing: What they don’t tell you about being diagnosed with a life-altering disease (or in my case, diseases) is that it doesn’t just affect your health. Doctors leave you with a list of possible symptoms and bottles of pills you must religiously swallow two to three times a day, but they don’t prepare you for the sheer amount of loss and grief that is chronic illness. As suddenly as my symptoms came on, my career as a college student ended, and with that the majority of the friendships and people my life had seemed based on so firmly. I can’t even blame them, really. I believe illness is relentless and selfish, and it greedily eats away at you, trying its best to steal everything that makes you, well, you. I never knew what true physical pain was until this past year. I had no clue that sheer pain could cause you to lose consciousness, that it would rob me of ever having another good night’s sleep, that it would steal my mobility and leave me unable to participate in my favorite activities. I never knew what it felt like to be so fatigued and tired all the time that just getting out of bed would seem like some great achievement. I didn’t know stairs would morph into mountains and showers would become my worst enemy. I was not prepared for the way my illness changed everything I thought I knew about living. Battling physical pain is now the norm, and I’m not sure that those around me can even tell on some of the days. A view of Aleigha’s feet and cane at the Mayo Clinic What they don’t tell you about chronic illness is that it can feel like you are left in the dust by your life. Not every friend will stick around to watch your struggle. It hurts to watch. I know this because I was on the other side once, sitting in the hospital day after day waiting for cancer to release my father from its nasty grip. You never get better, and that is a hard thing to understand unless you’ve experienced it firsthand. Medicine is so focused on fixing the problem that getting sick in this society often means people assume you’ll recover, but that isn’t always how it works. I may have watched as my life and my friends moved forward without me, but I forged a new path just for me. I had no idea that the best people seem to have the shortest lives. That when I finally found my people, our time together would be limited by the very illnesses that brought us together in the first place. No one told me that in the span of one year, I would lose four of my closest friends. That the special bonds we shared could be as easily broken as they were made. But for every dear one I loved and lost, I learned about the continuity of life and that, when my time comes, death will be merely returning home to the ones I love after a long, hard day. Here’s another thing: They also never told me I would find out who my true friends were and are, friends who have my back no matter what. That I would learn to empathize with everyone around me, that difficulty is not relative and that hard is just hard. No one ever told me I would become a stronger, more resilient human and that I would learn to find even the smallest bit of hope in even the worst of times. No one told me I would become a sun, a star, my own personal beacon of radiating light in the midst of my own tragic darkness. I had no idea I would fight a great battle, advocating with more power and passion than I had ever known. No one told me any of that, either. So as I look back at 2015, the year that almost almost conquered me, I am proud to say it didn’t. A black and white photo of Aleigha (left) and a friend Follow this journey on The Cane Effect. The Mighty is asking the following: What’s one wish you have for the upcoming new year related to your experience with disability, disease or mental illness? If you’d like to participate, please send a blog post to mentalhealth@themighty.com. 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.

Aleigha R

To the Person Who Helped Me Withstand the Unimaginable

We met when I was healthy. You snuck me away from a party to light tennis balls on fire in the middle of some field we traipsed through. I still have the scars from the thorn bushes that caught my ankle as you carried me on your back toward the house. You never meant to leave scars, only memories, you said. I am not sure whether I met you by chance or if it was meant to be, but the instant you walked into my life, I felt my body exhale in relief. “Here is someone genuine. Here is someone who is good,” it breathed. A few weeks later, we got into a car wreck. “You should have died,” said the officer as he looked at the car, slammed backwards against the guardrail. You were afraid, but you stood there like a lighthouse, holding me until I could breathe again and making jokes when the waves let up. You taught me how to be strong in the face of tragedy and fear. Summer came and I helped you move to the city. You didn’t fit in there and neither did I. But you stuck it out, studying day in and day out for the MCAT. Your determination and dedication inspired me more than you know. I can’t tell you how happy it made me to sit in the library with you while you studied away. I learned more from you than just medical terminology and physics. You taught me to make sacrifices. You reminded me that I don’t have to do what everyone else is doing. As summer came to a close, we went to the fair. The pain came out of nowhere, and at the time I could have sworn I was dying. I passed out in your car as you drove me to the emergency room. I remember hearing the concern in your voice as the world faded to black. You waited there all night and helped me home. In the morning you made me call my mom even though I didn’t want to. You taught me to stand by the people I love no matter what, to help others and to help myself. When Christmas came you took me to Leavenworth to see the Christmas lights. I was very ill and tired then, but for a few hours I didn’t feel like a sick person. You gave me a memory I will cherish forever. I never knew how to thank you. You built me shelves and bought me plants when I couldn’t see through the devastation and loss my illness had left me to face. And when the treatment went wrong and I became someone I could no longer recognize, you were there when you could be and encouraged me to keep going when you couldn’t. You got me through it. Summer came again and I got better for a while, but I was not the same. I was bitter and I was unkind to you. I wanted you to understand something you couldn’t. I wanted you to be there when you couldn’t. I resented you for it. I want you to know how sorry I am, that I missed you on my birthday, and that even though I did everything I wanted to, it wasn’t the same without you. In your absence, you taught me how to love you unconditionally. When the leaves began to fall, I began to fade out of the life I had created in the summer heat. I was sick and this time it had a much quicker agenda. I lost my mobility, my job, my independence, my purpose and myself. I went from coaching gymnastics and hiking everywhere to being unable to function. Just getting out of bed became a huge feat and I relied on a cane. Doctors were unable to help. I felt lost. So I sent you a text. You met me for coffee. To be honest, I was nervous. I felt guilty. You were there, though, and that was all I really needed. I was reminded of everything you had taught me the minute I saw your face. I started writing, reaching out, helping myself. I learned how to live with my illness instead of in spite of it. You don’t know this, but you make me want to be more, do more, live more. Keep fighting. Yesterday I sat beside you on the couch. You handed me a gift and after you made sure I knew you had wrapped it yourself, I unveiled a lightbulb that I could control with my phone. “The gift of light,” you said. You then spoke about how it could offer light in the darkness, how shedding a new light on a situation can uncover new paths, and of course that it matched (and one-upped) the color-changing candles my parents had gotten me one year before. By the end of your speech, your voice caught in your throat and tears were streaming down my face. As you hugged me, I felt my body exhale in relief. “Here is someone genuine. Here is someone who is good.” You gave me the gift of light, but what you don’t know is that you are the light. Written above are only a few examples of just how incredible of a person you really are. I don’t know how to thank you in a way that encompasses just how much I appreciate the fact that you even exist, let alone that I got to meet you and that you are a part of my life. There are no words. So thank you for all that you have done and will do, but mostly thank you for being you. Thank you for helping me withstand the unimaginable. A snowy outdoor landscape with Christmas lights decorating the trees Follow this journey on The Cane Effect. The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.