Most people who know me will agree that my life is somewhat…complicated.
I have never known an easy life- one without as much as a twinge of pain. I live pain everyday; it should have been legally changed to my middle name. But what, you may ask, do you define as pain?
Well, let’s start from the very beginning, from the day I was born.
I was not an easy first child, for I was born riddled with illness. When I was 3 months old, I had been referred to the eating disorder and failure to thrive clinic because I had not gained weight or grown since my birth. Which is evidently very dangerous.
I was also very sick all the time. I got the chicken pox, sinusitis, mono, laryngitis, meningitis, pneumonia, strep throat, you name it. So then some tests were taken and it was found that I basically had no immune system. I then had to get transfusions of immunoglobulin to increase my white blood cell count.
To add to being sick all the time, I also had multiple serious fractures. By the age of three, I had accumulated quite a collection of them. I had cracked my skull, broke my arm, broke my leg, and most famously, broke my femur.
I think it’s safe to say that I had sustained much pain. But life wasn’t done with me yet. I was bound for even more pain.
In fact, I am currently writing this story with a chipped wrist bone (which is being immobilized in a removable cast), my Chron’s is flaring, and my degenerative arthritis in my right knee (which requires a surgery that does not yet exist or a knee replacement) is very painful, to say the least.
But wait, you may say, how old are you? Degenerative arthritis? Chron’s Disease? Fragile bones? What the heck?
Well, I’m actually pretty young. I just turned 20 this March of 2015.
Now would be a good time to introduce myself;, I’ll call myself Lily (for my own protection) and I am a university student studying Environmental Biology with a Wildlife Biology specialization.
ANYWAY, on with the story!
My history of fractures was raising suspicion at the children’s hospital and social services were called because the staff thought my parents were abusing me. But as it turned out, I was referred to the Shriner’s Hospital in Montreal which specializes in orthopaedics, where they diagnosed me with Osteopenia. Which is, in a sense, the juvenile version of osteoporosis. I was born with it essentially.
I won’t go into detail about all the bones I’ve broken, because there are many and each story is really ridiculous. Plus I don’t feel like typing it out having an impaired hand. But long story short, I’ve had 13 fractures in total, all throughout my body. And this is actually how I make new friends when I go to a new school. Everyone is curious about my casts. But mostly, for friends I don’t get to see often, it’s like every time they see me, I have a new cast. So, to help my body from being too fragile, the specialist I see for my bones prescribes me Calcium and Vitamin D pills, to help strengthen them.
Keeping in mind that Osteopenia is a constant medical problem lingering in the background of my life, I have many real things that I deal with on a daily basis. In mid high school (so about grade 9), I started having intense migraines. And over the years, they just seemed to get worse and worse, and recur almost daily. Now, in 2015, they are a daily thing, and they are VERY debilitating.
This obviously became a problem for my standard of living was decreasing exponentially. I went to see my doctor for it and he sent me in for an MRI. The results were very strange, to say the least. Basically the ventricles that fed oxygen to my brain were too small and so my brain was stressing my body in order to pump in more oxygen. But not only that, my brain is too big for my cranial space and this causes a pressure buildup in my brain, called MIGRAINES! And all that time I thought they were diet-related or due to sleep deprivation. Nope! My body hates me!
So I was then prescribed migraine preventatives to prevent them from happening everyday and thank the lord for those pills. They allow me to live a decently normal life. Thought even on these pills I still do get horrendous migraines, but they are manageable with yet MORE pills!
Now, going back to high school, I also decided to become a vegetarian around the same time that the migraines started. But, then fate had another thing in store for me and decided that severe Lactose Intolerance was well deserved. So severe, that lactose pills did not work on me.
At that point I was kind of chubby-ish and my parents, extended family, and people at school made fun of me for my weight. I was being bullied for it. And I eventually developed an eating disorder at 14 years old; Anorexia Nervosa with Bulimia habits. I became severely underweight and very skeletal looking. I thought that being thin, meant that I would be more beautiful…But then I also started getting bullying for my thin figure as well. People snickered about how ugly I was, and how unhealthy I looked. There never seemed to be a happy medium.
People snickered about how ugly I was, and how unhealthy I looked. There never seemed to be a happy medium.
My eating disorder lasted 6 years, and I still have remnants of it. Though, it is more tolerable, having gone through invasive therapy (when I was 18) that took up 3 days of the 7 in a week. My marks in school decreased drastically and I was depressed all the time. I was a perfectionist and I was used to being an A-list student. So having failing grades was a new-found terror for me.
By 18 years old, I had been diagnosed with Anorexia Nervosa, Clinical Depression, Severe Anxiety, Asthma, and Borderline Personality Disorder.
By that point I thought I had reached rock bottom. I had lived through horrendous things. I’ve had anxiety attacks so bad (on more than 4 occasions) that I had to be sent to the hospital by ambulance and be put on oxygen.
I think the worst part of being 18 was my parents’ divorce, which did quite a number on me. They had put me right in the middle of everything. I had filed an affidavit against my father because of my mother’s blackmail and my father made me nullify it by also blackmailing me. It seemed that everyone was blackmailing me. And I had frankly had enough. I was so deep in depression that I couldn’t see the light of day anymore. Everything was dark and gloomy and I had lost my will to live. And so I tried to commit suicide, 9 times. Each of those times, warranting me a hospitalization under suicide watch. I had been removed from my house 2 times to stay at a crisis centre because my home environment was so toxic. I also had anonymously called social services on my dad because he had physically and emotionally abused me and my siblings for most of our lives. We now no longer live with him, but live with our mom. But I have learned to forgive him and we get along okay now.
18 was possibly the worst year in my entire life. I had lived through so much and it seemed like every time I took a step forward, I would fall 3 steps back. My health was deteriorating mentally and physically. The lack of nourishment and care made me very vulnerable to illnesses as well as more fractures.
I had ultimately felt abandoned by my parents, by the world… Until I started dating my best friend (we’ll call him Toby). We were crazy in love with each other. I had never felt so close to anyone in my life. He helped me overcome the darkest of days and he became my crutch throughout all my pains. The bond we had was like nothing I had felt before…and I still think to this day that it was unique and different than any bond I had ever shared with anyone ever. It was kind of like the bond you have with your dog. It goes without limits or bounds.
During this hard time, I took up springboard and platform diving to de-stress (I had been diving for a couple years prior). It was the only risky sport my doctors would let me do because of my bone condition. And I had become really good. I was supposed to compete regionally and I made it on the team…but during a practice, I injured myself really badly and I wasn’t able to walk for almost a year and half. During this 1.5 years, I had been diagnosed with a sprained knee, then it changed into a torn ACL, but then, after an MRI, I was finally diagnosed with degenerative arthritis in my right knee. Which explained the enormous amount of pain I was in. I was always on crutches and they were really not fun to use. My orthopaedic surgeon started giving me Hyaluronic Acid injections and I now take them every 6-7 months so that I can walk unaided by a crutch until I can have surgery to repair the damage. Essentially, my knee cap bore a hole through my ligaments and it constantly grinds on my femur bone, causing massive bone erosion. The injections give a layer of lubrication between my knee cap and femur bone and so it minimizes the pain.
Around the same time as my knee problems (which required me to wear a brace constantly), I fell down some stairs and got a 3rd degree sprain in my left ankle, essentially ripping all the ligaments. I had lost function of both my legs since my right leg was too week to carry the weight of my body. So I was in a wheel chair for a while, until the swelling went down in my sprained ankle. I now have a brace for that too, that I use when I do physical activity.
I need surgery for both my ankle and my knee. For my ankle, it’s more optional because the ligaments are so small it’s not worth fixing them, but if the pain is too intense, it is a measure I can take. For my knee, it is a little more complicated. The surgery that I need to repair the damage done by my knee cap, does not currently exist. So I take injections while I wait for medicine to advance. There’s that, or when I’m about 40, I can have a knee replacement. Which is VERY young to be having such a large-scale surgery.
So while I was physically injured pretty much the whole duration of my relationship with Toby, I was also really mentally ill too. I had constant relapses in depression and my eating disorder. They were so bad, that I stopped recognizing myself. It got to a point where, eventually, Toby snapped and he couldn’t take it anymore. So we broke up. And he started dating a girl immediately after, whom he is still dating to this day. It’s been 7 months since we broke up… We had dated for almost two years. I honestly don’t blame him for leaving, I couldn’t recognize myself, so how could I expect him to recognize me?
We’re still best friends. We wanted to keep it that way because we had been through so much to just forget about it all. I had literally saved his life from a suicide attempt, and he had saved mine for the same reason, on multiple accounts. He never stopped loving me, and I never stopped loving him. But it was time to move on, I think.
Obviously, for the very emotionally unstable person I was, at the time of our breakup, it was very hard for me to cope. I become suicidal once again. Because in those moments, I thought he no longer loved me (which I later found out he still did) and I thought that if he no longer loved me, my best friend, who had been through everything with me, then who could?
The two weeks following the breakup were awful. I couldn’t concentrate in school…I even stopped attending. I took a couple days off of medical absences from school to deal with my emotions.
Had it not been for my CEGEP English teacher and French teacher, I don’t think I could have pulled out of the depression. They were the most unlikely of souls, who deeply cared for me. And I couldn’t understand it because I had never done anything for them that would have earned that kind of compassion. But yet they cared more than anyone else around me. And I would often go to their offices and talk with them and they would give me advice.
I miraculously pulled out of the sadness that invaded me and my life turned around. I was literally seizing the day, every day.
And then suddenly, a couple weeks later, I miraculously pulled out of the sadness that invaded me and my life turned around. I was literally seizing the day, every day. My marks went way, way up, and I became actively involved in my community, and I was promoted at my part-time job.
Things were starting to work out for me, for once in my life.
I was so thankful for those teachers, that I made them lovely little gifts, which they greatly appreciated.
That had been my last semester of CEGEP and I graduated in December 2014. I started university right away in January 2015 and I had hoped it would bring me happiness, to finally be studying the things I love. But my health, once again, got in the way.
Since October 2014 (around the same time as Toby and I broke up) I became a vegan. And things were working out alright- diet-wise. But then I developed an intolerance to beans, which then eliminated a major protein and iron source. And as you may have guessed, I became heavily anemic.
At the same time, I started having intense abdominal pain and I couldn’t eat without the pain increasing…so I stopped eating all together. And I became bed ridden for 2 weeks. It was really not fun. This intense pain continued on until now, May 2015.
After a 5 month wait, and some tests (a colonoscopy and biopsy), I was diagnosed with Chron’s disease. I was diagnosed literally 3 weeks ago. And I am still waiting for a follow up on my biopsy results. I have recurring abdominal bleeding and the pain is sometimes unreal. But there’s not much I can do until I see my gastroenterologist.
It seems like my whole life is a waiting game. I’m always waiting for results of some medical test, to get relief by some pill.
I currently take 7 pills a day, all for various medical problems. I feel like a whale most days because my intestines are so inflamed, though I have a minor case of Chron’s. I can’t imagine what that pain would be like having a severe case of Chron’s… I consider myself lucky on that respect.
I have a friend who has severe Chron’s and he’s had a liver transplant as a result. Poor kid.
So now you know my story. My medical story. I think the only thing I left out was that I have low blood sugar and low blood pressure and I pass out often, but meh, I feel like it’s not as significant as everything else.
I guess you can say that I have lived through shit. Through hell itself. I don’t know what it is to be normal, to feel normal, and to have a pain free day. I hope that one day, medicine will advance enough so as to cure most of the things I have. Because degenerative arthritis, osteoarthritis (which I have in almost every joint), Chron’s, and osteopenia have no cure.
But I guess since I made it this far in my life, 20 years of suffering intolerable pain, I prove to be quite a trooper. I have almost given up my life entirely for death, because I was clouded by a chemical imbalance in my brain. But now that I’m relatively okay, I don’t ever want to give up.
There are so many things I have to offer this world. I have helped so many people by being compassionate because of everything I have lived through. I find I can relate to most people actually. But my heart lies with animals. I love animals more than humans, which sounds horrible, but I do. They don’t judge. And I have been a victim of judgement and criticism my whole life. Which is why I am incredibly close with my dog Snoopy. She’s my canine baby, even though she’s 8 years old.
I want to be a wildlife rehabilitator and a herpetologist (specialist of amphibians and reptiles) so that I can help preserve the species of these amazing creatures that we humans are putting to extinction. I hope to one day obtain my PhD and my post doctorate studying these beautiful creatures. I want to change the world, and make it a better, safer place for all animals, be that wild or domestic.
I have never been one to give up. I am a fighter. And I think, from what you have read of me, that you can agree that I have fought through great medical anomalies in my life, but I have surpassed them all. I still live with pain, but it doesn’t stop me from trying to lead a normal life.
And even though my medical problems suck, they make me very unique. I don’t know anyone with as many medical problems as I do. And I take pride in that strangely. Is that so wrong?
I’ll let you be the judge of that.
I had asked you, at the beginning of this story, what I defined as pain; my simple answer to you is that it is a thing that inhibits you from reaching your full potential. But it is not unsurmountable.
If I can leave you with one message, dear reader, it is that no matter what life throws at you, it is just a test of your strength. You can chose to be weak and let life walk all over you, or you can stand up to it and accept its challenges. Because the results, well, they are rewarding beyond anything you can possibly imagine.
Imagine a better future, and make it so.