“Hi, my name is Shereena. I am a 26-year-old female who lives with a rare bone condition called Osteogenesis Imperfecta, aka OI. OI is caused by defective genes. These genes affect how the body makes collagen, a protein that helps strengthen bones. Long story short, my bones can break easily. I think I’ve broken over 100 bones and can’t keep track of how many stress fractures I’ve had. Crazy, right?!
When I was born, my mom was told I’d never have a normal life. I was apparently never going to have kids and was supposed to be completely deaf by the age of 16. I can vouch they were definitely wrong. I’m most certainly not deaf and I actually have a 1-year-old son who is my world, but we will come back to that.
Growing up as a child, I didn’t really know any different due to the fact of my mind being so young, innocent, and pure… even during continuous days and nights inside a hospital room with broken bones or recoveries from surgeries. It wasn’t until I hit my teenage years I really started to realize I was different. It’s hard growing up as a young girl with a disability. Teenage girls are so predictable with their thoughts and feelings, crushing on boys while constantly comparing themselves to other girls, judging their bodies while trying to ‘fit in.’
Life With Osteogenesis Imperfecta
It was hard to feel vulnerable while having such a strong personality. I was quick to put on a brave face like nothing ever bothered me, but deep down there were mixed emotions. As much as I got on with just about anybody I spoke to, allowing myself to have a romantic relationship was hard in high school, mainly as I felt embarrassed being in a wheelchair. Kids could be rough so it was easier to avoid it. If I could go back in time, I’d tell my younger self to have more confidence and that being in a wheelchair never mattered! After I finished high school I became more confident within myself, and that took time and lots of self-esteem skill building which led to relationships and allowing myself to live my life just like any ordinary young teenager/adolescent.
I think the hardest part of living with brittle bones was the constant ups and downs, especially with trying to keep physically fit. You’ve continuously got to find a balance and you’re always learning. If I exercised too much, I risked causing a stress fracture, but if I didn’t exercise enough, then my muscles weren’t going to get any stronger. Finding a balance has always been tricky because if you fracture, you are back to square one and that is never a fun time. Staying physically fit has always been a big deal for me, not only because it is highly important to prevent fractures, but because I have always been a big believer that to stay emotionally stable you need to be physically stable.
Having a good support network has also been my biggest influence; family and friends to fall back on always helps. My biggest supporter has always been my mom. She’s been my rock since I was born, my biggest cheerleader always right behind me cheering me on through the good and bad times. There are lyrics from a certain song by Celine Dion that describes our relationship to the dot and they are:
‘You were my strength when I was weak
You were my voice when I couldn’t speak
You were my eyes when I couldn’t see
You saw the best there was in me
Lifted me up when I couldn’t reach
You gave me faith ’cause you believed.’
I’ve gone down many dark paths during my life and my mom has always pulled me out of them. I didn’t just have my mom though, I was surrounded by many family members and friends who love me dearly. Having a good group of friends to always lean on when I needed somebody to talk to about things I sometimes found hard to tell my mom was always helpful as well. But there were a lot of things I didn’t want to admit to or say out loud, and those were the times I turned to not so healthy ways of coping.
If I could give any advice to those living with any chronic conditions, it would be to trust your journey and allow yourself to feel all emotions during the process. Blocking out pain and sadness does not help you recover and grow. I used to be hard on myself growing up when I felt any negativity or what we call ‘depression.’ I hated that word, part of me still does, but that doesn’t mean I never felt it. It just meant I never liked to admit it. If I have learned anything in my life it would have to be you cannot have a rainbow without rain; we cannot appreciate the good days without experiencing the bad.
There is a quote I always follow and that is, ‘Be grateful for all the obstacles in your life. They have strengthened you as you continue with your journey.’ Every lesson life has taught me I have reflected, including my job, studies, and relationships.
I work full-time under the LAC program, which is a program under the NDIS (National Disability Insurance Scheme). Each day I work with all different kinds of people and families who are facing their own challenges while living with disabilities, and there is no greater joy than being able to show them living your best life with a disability is possible!
In 2017 I met the love of my life, the father of my child. Robbie and I met on Tinder… lol, yes it actually works! Before Robbie, I wasn’t really looking for anything serious. I was just finding myself, learning as I went, and having a good time meeting different people. During my online dating days, my favorite part was probably just being unapologetically myself. Instantly I was up from on my Tinder file and made sure I had full body photos showing I was in a wheelchair and had a disability, but that I wasn’t the type to let it stand in my way of living my best life! I met a lot of fun people; some didn’t go anywhere, some I dated on and off, and some turned into great friendships.
The funny thing is, I used to always ignore guys that had annoying ways of starting a conversation like, ‘If a bear and a panda got into a fight, who do you think would win?’ I used to just laugh and click unmatch. I swiped right on Robbie one day and instantly came up with ‘you’ve got a match.’ Within minutes, he messaged me. Of course, it was the typical annoying way of starting a conversation that I normally ignore, but for some reason, I didn’t ignore him. I just kinda went with it. Maybe he got me at a good mood. Straight away there was a connection; I can’t even bring it to words, I just knew there was something different about him.
We spoke for hours and added each other on typical socials like Insta, Snapchat, etc. I can’t really remember what happened but I do remember randomly ghosting him. Life was busy and I was going through a bit of a party girl stage having a good time with my friends. Months later, Robbie was always sending me Snapchats though, and I would reply here and there until one night I decided to stay in and rest to have a night to myself. Later that night, I received another snap from Robbie asking how I was. From then on, we continued where we left off and eventually met up over a drink. As soon as I met him I felt a form of love for him and I had no idea how. Robbie and I both admitted we had feelings for each other and couldn’t explain it. We continued to just see each other and see where it went, and well… it went quite far. Within months we moved in together, got engaged one year later, and I fell pregnant about 2 and a half years into our relationship (with a child I was told I’d never have without great risks).
As much as my life started in the most amazing way in 2017, my life also took a wicked turn for the worst – just another obstacle I had to overcome. In December 2017, I randomly began to have spasms in my esophagus leading to absolutely everything I tried to eat or drink getting stuck in my throat and immediately coming back up. I didn’t notice it too much in the first few weeks it started, but it got worse very quickly. I lost over 30 pounds and was left in dehydrated states on many occasions. I was admitted to the hospital multiple times, undergoing many surgeries and tests with no answers.
I was diagnosed with reflux and GERD, and was even told I was anorexic and accused of purposely making myself vomit for attention. I got to a point where I was so mentally exhausted I gave up looking for answers. I went nearly 3 years without a diagnosis and was left with so many unanswered questions. I lost so much weight and was terrified at the muscle I was losing. I ended up with a stress fracture in my left tibia, and I almost felt defeated. I looked in the mirror and didn’t even recognize myself anymore; it was almost as if my body was eating itself away. Through all my fractures and surgeries I don’t think I have ever felt so much fear in my life. Then I fell pregnant with my son, and that is when we absolutely (excuse my French) sh*t ourselves.
I instantly went into panic mode – I couldn’t feed myself well enough to stay healthy. How could I make sure I had a healthy pregnancy?! My journey throughout my pregnancy instantly started off as a ‘risk’ as it was. Because of my OI, let alone some random eating disorder, I was told not to expect to get past 28 weeks strictly because of my OI and the stress on my lungs getting compressed from having such short stature. I was classed as the shortest person they have seen pregnant… what a confidence boost. However, I was blessed with the most amazing medical team, regardless of their doubts and fears in the beginning. From my fetal specialist to my midwife all the way to the anesthetic teams, they were beyond amazing and were truly angels in disguise. My biggest angel in disguise was my son though, because being pregnant with him led to finally getting an answer to my random eating issue.
My fetal specialist and midwife were so concerned by my weight, they connected me to an amazing gastrologist who normally only sees private patients but heard about my rare case and immediately took me on, especially knowing I was pregnant. And then, there it was… another rare condition I was diagnosed with. Achalasia, oh sweet achalasia. I was beyond stoked I finally had an answer and confirmation I wasn’t just going crazy; this was a real thing! After protein drinks, to soups/ puree, to multiple specialists and tests that all failed. Within 2 minutes of seeing my lifelong hero in his private clinic, I instantly got an answer.
I gave birth to my son via c-section at 34 weeks… yep 34 weeks I said! Scratch that negativity of not making it to 28 weeks because this tough woman made it 34 weeks. I ended up having a life-saving surgery that was all completed just by an endoscopic procedure, and I was able to eat again! It was all as if my little miracle was supposed to be born.
Recovery being a struggle is an understatement. I carried Harvey so well we were expected to make it to 37 weeks (full-term), a massive expectation considering we were only expected to make it to 28 in the beginning. Because I wasn’t showing any concerns with my breathing, we thought everything was good until one night I woke up absolutely screaming, telling Robbie I couldn’t move and to call an ambulance. I thought my femur (most painful bone to break) was broken!
Two ambulances later and a bunch of drugs (safe for pregnancy) just to get me out of the house, I was rushed to Westmead hospital where my team was. They were worried because of my attitude; they were so used to me being tough they weren’t used to seeing me so vulnerable. I was stuck on my back for two full days not moving, and couldn’t even get up to go to the bathroom. I didn’t eat or drink anything for those entire two days. I was hooked up to cannulas to stay hydrated. I knew I couldn’t keep anything down so the last thing I needed was to jump up from needing to regurgitate. We had no idea what was going on. We did an x-ray and there were no broken bones so there was only one last thing to do… take Harvey out.
On July 5, 2021, Harvey entered the world by C-section and it turned out it was actually Harvey causing the pain. He decided to move my entire uterus to the right side of my body and was compressing all the nerves. It was expected now that he was out, I would have no more pain, right? Wrong. I still could barely move. I was so terrified I couldn’t help but think, ‘How the heck am I supposed to be responsible for this little human when I can’t even wipe my own backside without screaming right now?’ It was the unknown that really got to me. Thinking about this being permanent was eating at me, and I knew I had to snap out of it because my son needed me.
We were in the NICU for 2 weeks just for close monitoring. I didn’t have time to even think about the pain I was in because mother instincts kicked in and my boy needed his mama. Robbie was an amazing support in the background, it was just difficult for him because Harvey was born during the COVID pandemic and they were only allowing mothers in the NICU.
Most of the nurses were amazing but I won’t lie… I coped with the occasional judgmental look as they clearly didn’t understand why I could barely move and had never seen me in my true independence mode. It felt pretty degrading as if they were thinking, ‘What on earth was she thinking having a baby?’ But none of it mattered to me; I was too busy in love with my little miracle. Harvey got to come home after he was off tube feeding and was fully taking the bottles. Finally home with both of my boys, life couldn’t have been any better.
One whole year later today, and it is only now I have reached recovery and can finally fully weight bear on the leg again, after a whole year of intense weekly physiotherapy. There were a few setbacks along the way but nothing I couldn’t handle.
And well, that’s it, this is my story… well some of it anyway.”
This story was submitted to Love What Matters by Shereena Townsend. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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