Hi there! My name is Makayla, Kayla. I am 18 years old and I have gone through a lot in my life. I have made it through many forms of abuse (mentally/verbally, physical, and sexual) I have gained a few mental disorders such as PTSD and so on. Lets not get into that. Today I would like to talk about the struggle and stress I went through, while becoming disabled.
In middle school I started having pain. By the time I hit freshman year of highschool the pain had increased immensely. Things began to get really hard for me that year. It turns out I was born with issues with my body, deformities that we never knew about. These deformities started to take a toll on my whole entire body. So it was time to start fixing these issues. The original goal was to fix my ankles first in hopes that by making my base better it would allign the rest of my body. After my first 2 ankle surgeries I got into an accident in gym class. This accident popped my implants out of place, tore my right ligament, caused severe nerve damage and trauma to the bone. What was supposed to have been 2 surgeries is now going onto 12. And thats only on my ankles. Most of my surgeries have failed and we have been trying to correct me and the failed surgeries. Soon we will be moving passed my ankles and going up my body to see what else needs surgery. Thats well over 30 procedures and only one was an actual success.
Some of these procedures were:
Cut and reatach muscles in calfs of both legs, titanium implants, removal of implants, removal of stitches (had to be dug out I rejected stitches they tore through my muscle and flesh) moving bones, more digging of stitches (mutliple times) right heal cut off, moved/turned and fuzed, added 3 screws (two in heal, one on outer side of ankle) added an extra bone (donated pelvis bone- I sent thank you card to the donar) fixing of the right ligament, recut and reattatch calf muscles on each leg, pin down ligament on right ankle, removal of all 3 screws(they came loose and started moving, pinching my skin and hurting) (had to have a catheter in leg to block pain) and so on (all I can remember off the top of my head) my recent surgery they added 3 or so wire screws and two plastic rods and fuzed my ankle slightly.
I cannot tell you how many times I had to relearn to walk. It was, and is very hard and confusing for me. I have days where I cant get out of bed either cause oain or I cannot move. I am tired all the time I wake up tired, I nap Im still tired. I have issues sleeping a full nights worth of sleep. I wake up a lot from my pain. And yet my body wants to sleep all the time. I have bad muscle spasms that make me kick and makes it hard to stay still. Its hard to get comfy at night. One position hurts one thing I move and something else hurts. Sometimes I cant feel my legs but can move them, sometimes I cant feel them and I cant move them. Sometimes they hurt soo bad I wanna cry and I cant move them, sometimes they hurt so bad and I can move them. When walking my legs can give out without warning and I fall. Sometimes I go to walk and I cant lift my legs and they try to drag behind me and I fall.. Sometimes I go to walk and my legs move but not the right way and I trip overmyself and fall. It is so hard.. The worst part is not fully knosing or understanding why. It makes you feel crazy. I have so much nerve damage in my feet that it hurts to put on socks or shoes. It burns like youre being stung by a bee. Thats from surgeries. Its also numb In some areas on my right foot. That burn is a constant burn it never leaves. I have more nerve issues that started in my back and has spread around my cheast, sides, stomach, neck, thighs and now to my knees where it burns. A different burn than my feet but similar. Its like splinters or slivers everywhere in your skin so anything that touches you lightly hurts. It comes and goes and hits randomally its so bad that just the light touch from clothing like my shirt hurts so bad. I can no longer wear real bras due to it. No clue as of why yet.
I fight every day to keep walking but I am slowly losing my mobility and gaining pain. I am in pain 24/7. There is no time where I am not in pain; only some days are better than others. On the pain scale from 1-10, 10 being the worst my norrmal days are at 7/8. I have always drawn my whole life. Now I have been painting for just over a year and it is an amazing distraction from the pain and life. It helps me so much in many ways. And I hope one day my art will help others as much as it helps me. My bones are shaped weird, they slide of of place with the slightest movement. Dislocating and getting stuck plus overlapping onto other bones. I wear leg braces to help hold my bones in place. They also help by catching me when my legs give out, and the pressure helps with some pain. I have a custom right ankle brace and am going in for a custom right knee brace, after my next surgery I will be going in for a custom knee and ankle brace for my left side. And soon a full right leg brace. I can walk, just not for far or for long. Every step kills but I fight everyday to keep going. I have been getting worse as of lately and have been needing my crutches and wheelchair a lot more and we are unsure as to why. It is scary, the thought of losing my mobility. But I will never give up. I have a long ways to go, and I will keep fighting. I have a long list of issues and a lot still unknown. Im waiting to have more blood tests done, genetic tests, EMG Testing, more MRIs and xrays to be done. I have appointments almost Every week, sometimes 3 a week.
Here is what I have been diagnosed with and what my doctors are discussing on testing for that they are afraid I have:
I have pediatrics flexible flat foot deformity, mettaductus, hyper mobility syndrome, inflammatory disease, muskuloskeletal disease, neurapathy, water on the knee, 2 forms of scoliosis, multifactorial gate problem, myalgia, a no longer working ligament believed to have oesteo arthritis in hips and back, rheumatoid arthritis all over, have to be tested for cerbral palsy, a rare form of MS and my doctors are afraid i have simething called duchennes muscular dystrophy. So far no signs of MS but they will keep looking. Im just know getting my knees checked out docs said my knee cap in my right knee is in the wrong place, too high and too close to the bones making it rub. Still doesnt answer all my issues in my knees so still unknown and so on thats all i can remember off the top of my head lmao.. I just found out my bones and joints are failing on my right side whatever that means all ik is if they continue to fail it will mean a whole new set of surgeries going up my body
Sadly some things have made surgery and treatment hard. It turns out I am allergic to stiches (who knew??) Both disolvable and cat gut. I am also allergic to cortisone and its other offbrand name, which is the treatment for inflammatory disease..
Due to my surgeries I had to leave highschool early. I tried to do online school but the schook I was at kept booting me out of online be resigning me back up for school at their place so being listed in a school already ruined my chances of doing any other school aive had to resign paperwork twice to say im not going there. Eventually it all became too stressful and my doctors told me it was too much on me that I needed to stop and wait cause it was just tearinf me apart physically and mentally. I never got the regular highschool or job experience.. I still have more surgeries to go. However I started selling my artwork! I ship my work all over the world. I have started making an income doing what I love!!
Lets jump back to that highschool I was talking about. I was already listed in a program for my anxiety that allowed me to take breaks when needed, to get extended time on work and to have personal one on one helo. They never followed it at the higshcool the teachers didnt care. Even though they were LEGALLY bound by my contract to do so. They lied and claimed I never asked for said things when I had. I have even been screamed at by the VICE PRINCIPAL in front of everyone, while having an anxiety attack and you know what their excuse was? My hair is colored so I draw more attention than others.. Remember that accidnet In gym I talked about?? Lets rewind to that. After surgery number 2 I was still in gym class. None of my doctor notes were enough for the gym teacher. I had to get new notes every week to better explain what I was allowed to do cause "no lower limb activity" wasng enough. I needed notes to say I was allowed to use my arms and all that. By the time I was finally off my crutches (still in a boot) in gym there was one day everyone was playing basketball and kids got permission to walk laps instead of playing ball. I was not allowed. I didnt have a note stating I could so they would not let me, even though I was walking arounf the school with no crutches. Now I mind you in the times I was on crutches I changed for gym class every time I had it and participated with what they let me like keepinh score, using weights on my arms and I took all the tests they gave. (This is the second time in gym, I had to drop the first time due to my first surgery) I was excited to be pushing to grt gym done for you have to have 2 gym credits to graduate. One day, it was a day for riding bikes around a corse in that town. I had told my gym teacher that I was not yet ready physically or mentally for I was still on heavy medication for my pains. He told me that if I did not get on that bike and participate, he would give me 0 gym credits for the year and fail me. Being a kid worried about my grades since they all were failing fue to surgeries.. Not to mention I had been working so hard in gymclass.. So I went for it I got on that bike and I went. I had been dizzy and groggy for days so as you could imagine.. I crashed. I hit a fence near a grave yard and I fell, folding my body underneath the bicycle. I hit so hard I broke the tar sidewalk. I was covered in blood. Dripping actually, so bad that a pedestrian had to ask me if I was okay. I said I was cause I was just trying to focus on getting back to school. The gym teacher made me finish the course with everyone whilr I was literally leaving a trail of blood. As we were continuing I remember the teacher cracking jokes like "watch out for that telephone pole." (Exact words) making fun of me as we passed other objects getting the whole class in on making fun of me and laughing (being someone with bad anxiett and social anxiety you can only imagine how bad this made me feel.) We got back to the school and i go to the nurse and they give me a bandaid. And that was it. That night I went to a friends as planned. They lived near the school so we walked to their house and to school the next morning. By the time I was in class I was in so much pain I was holding back tears and eventually could barely walk. I went to the nurse and my mom came and picked me up. I showed my mother my deepy bruised and cut up legs and she freaked out it looked horrible and she was so upset that she never recieved a call at the time of the accident. I had to go to the hospital anf had xrays done to confirm that every thing had popped out of placr. My doctor said that it normally takes the force of a car accident to pop them out. I was of course rushed into surgery the next week to remove implants on one side (cant do both at once) turns out, the school never even filed an accident report! Which they LEGALLY have to. And due to it being the gyn teacher who pushed me so hard to get on that bike my school counselor said "Well theres question to whether or not the accident ever happened." They thwn began denying the incident, and thanks to the nurse and gym teacher not filing a report, they got away with it. I remember rescheduling the next surgery to go to the school dance with my bestfriend who was moving away. My shoes broke and I couldnt wear them so the school told me to leave and would not let me explain that i can't wear them like that or i can move my implant and it can rip through my skin if were not careful. The vice principal was yelling over me and wouldnt listen. I had to sit the whole dance, cause my ride wad with a friend. Due to more surgeries gym was becoming dificult again. I had to be moved to the alt gym class for those with dissabilities and I finished gym that year in that class. At the end of the year I had 0 gym credits. No credit from the previous gymvlass and continuing onto this one. Which still upsets me to this day, cause I got on that damn bike to get that fucking credit. And that bike accident RUINED my life and STILL NO CREDITS. None of the teachers except two would work around my issues and help me. One even lost a whole pile of paper work I worked weeks on and handed in and it was just "gone." Wanna know something worse?? One day some kid asked if he could push me to class in my wheelchair. I accepted thinking they were trying to be nice. They began to run as i was yelling begging them to stop, they very suddenly they let go of me. I was on track to hit a wall, so inorder to avoid crashing and hitting my judt operated foot on the wall.. I stuck my hands in the wheels. I hurt myself in order to not ruin my surgery progress. I went to a sudden stop (swollen fingers) and all my school supplies went flying. No one helped me not even an offer I had to struggle to retrieve my school supplies myself. My art teacher saw the incident and you know what she did?? Called the office and reported ME. I was sent down and the nurses took away the wheelchair and I was forced to use my crutched, while still too weak to use them. Imagine that, taking a wheelchair away from a teen who needed it. So as you can tell school was extremely stressful.
My mother and my boyfriend have been the biggest helps. I have been with my boyfriend for almost 2 years now and I am thankful for all he does for me. Both my mother and boyfriend encourage my art. I have no clue where I would be without art and them.
❤ my mother is also disabled so she understands.
This has been my life.. Thank you for taking the time to read my story.
