A Letter to My Loved Ones

Dear friends and family who have stuck by me,

I notice you. I notice when you help me, when you are there for me, when you support me through the rough times. I notice you when you drop what you’re doing to assist me with something. I notice you. I am so very thankful for all that you have done for me. It’s been difficult to accept what my body has done to me. It’s taken so much, but I am blessed it has not taken you away. You may not realize this, but those little texts, the hanging out when I am lonely, the random calls, and the offers to help clean, cook, etc. are much bigger than just favors- they are blessings. These little things make me feel wanted, special, and cared about. I have lost so many people from being so physically ill, but I have found who my true friends are. I can’t express how thankful I am for you guys being around. I have learned so much from this experience and without you guys, I wouldn’t have learned any of it.

So here’s me saying my deepest thank yous, here’s me saying that I love you guys. I love that you guys help me, I love that you guys weren’t angry when I started needing a wheelchair. You guys were there when I needed a shoulder to cry on and when I needed to make some of the biggest decisions of my life.

As a chronic illness patient, it’s hard to know who will stick by me thick and thin. You guys have helped me realize that there’ll always be someone there for me.

Love,

Your Loved One With Chronic Illnesses

When You Must Chose Between Pain and Freedom.

Making the rough decision to get a wheelchair

“Thank you Babe for getting this darn walker out of the car!” I tell my boyfriend as I unfold my walker in front of me. It was a warm, sunny Sunday afternoon and we had just left a long day at church but stopped off at the local store because I was out of food, I looked up and saw the long walk to the front of the store from my handicapped parking spot and sighed. When I got to the front of the store, I was already tired out and we still had to shop. So I hobble into the store with my boyfriend leading the way with the basket.

I suffer from Autoimmune Diseases that are taking a lot from me-- quickly. It has stolen so much from me and given me things in return that I really don’t want, like unimaginable and horrific pain, sleepless nights and days spent in bed.

I was able to go five minutes without pain. It came on quick and suddenly. My knees buckled, my breath was stolen from my body, my teeth clenched and my eyes watered. I bit my tongue and continued walking, I was determined to get the things I needed. I tried to hide the pain like I usually do from my boyfriend, I hate when he sees me in pain but the mask came off quickly and in a loving way, told me to sit and that he’d help me retrieve what I needed.

This is normalcy for my boyfriend and I. My walker doesn’t help me and the pain only stops when I sit. It’s hard on both of us and cuts our dates and fun times short. I don’t want to have my fun days stopped.

Later that night, I went home and thought about getting a wheelchair. I had been thinking of asking for a while now. I cried and asked myself why me? Getting a chair is scary, you have so many things you need to think of when you are looking to get one. Thoughts like: what if they stare? What if they call me names for not being paralyzed? What about the judgment? Then you have to contemplate whether they are going to think you are giving up, is it worth it? I asked myself the same questions over and over again.

I eventually realized that people’s opinions don’t matter and that if people want to stare, that’s their issue. If this will get me out and about, if this will give me some sort of sense of freedom, why not? The thing is, this sort of thinking grew and developed from society’s fear of those who are different. They hate on anyone they can’t understand. Society makes those like myself doubt themselves. Society tells me that because I am not paralyzed I do not need a wheelchair. Society, society, Society! It’s funny how society is usually the reason that many people become like myself: waiting till the last moment to get what they need.

Against what society wishes but in agreement with my family and friends, I decided to listen to my sister and boyfriend and I asked for a wheelchair. It was scary, nerve wracking and extremely hard to admit I need a chair now. My doctor was amazing and thought that I needed it as well.

As a society, we must change our thinking patterns. We must stop allowing passion to run our reason. We must teach ourselves and others the truth, and that is not everyone in a wheelchair is paralyzed and not all illnesses are visible.

(has been submitted to the Mighty for possible Publication)

Trials and Tribulations

I have learned that while trials and tribulations are hard things to over come, using them to teach and better the world is better than moping and thinking things will never be better.

Yes, sometimes our afflictions don't get better, but the way you perceive them can make a world of difference. Instead of staying in the thinking position where you're telling yourself 'why continue if it's only going to get worse?', ask yourself 'how can I use this experience to better the understanding of those around me? How can I help others with this experience?'. Don't let yourself be your own worse enemy, fight against the intrusive thoughts.

If we can remember that although these things happening to us probably royally suck, others may not realize that. If we use this to help those who don't realize how it truly does suck, if we use it to show the world that these stereotypes are not real, we can use a really sucky thing to better the world around us. 

I know that by doing this, it has bettered me as a person and has truly helped me see the smaller things in life as blessings. 

You are strong, you can do this.

When Two People Ruin It

I love my religion, my faith and religion have gotten me through so much. BUT with that being said, I am fearful of being myself. Our church teaches that LGBTQ are born the way we are. That trans people (this includes those who don't fit under the normal male and female) are gods creation and that we must not bully them, hate on them or anything of the sort. They were born this way. THIS is what they teach. With that being said, so many "GOOD" Mormons still refuse to listen to this. I've witnessed a transwoman be made fun of behind her back, (yes I tried to stop it). So I'm deathly afraid of being talked about behind my back. I don't fit the gender binary, I'm sorta down the middle, agender/genderfluid. I don't share this very often, in fear of someone attacking me. Don't get me wrong, the church is amazing and there's been much more accepting Mormons than not in my ward. 

I'll say this though, it took only 2 people out of 50 ward members to make me go inactive for a month and go back into the closet. The only thing that led me back to the church was the Holy Spirit. I'm happy I did, as I'd not have found the love of my life if I didn't. 

But I want to feel free to express myself without breaking my religions doctrine, is that too hard to ask? I don't want to feel like I'm going to be made fun of for being myself.