My Story

I have never thought of myself as having “chronic health issues,” but I suppose I would fall into that category. Pain is and always has been a part of my life. I have tried to not let it “define” me - although what I have been through has definitely greatly impacted the person that I am and the way I look at life.

It all started when I was just one year old. I was the fourth child in the family - the first girl! Shortly after I started walking, however, my parents could tell that something just wasn’t right. And then the screaming out in pain started. It took many doctors and several months to finally find my diagnosis - I had a tumour - growing right on my spinal cord on my thoracic spine (in between my shoulder blades). Surgery was risky but necessary. When I was eighteen months old, they operated and removed as much of the tumour as was safe, having to leave some behind. The risk of the tumour growing again was high, but the doctors and my parents hoped that would not be the case. We would just have to wait and see.

It wouldn’t take long to find out. Six months later, I was back in the hospital, having my second operation to remove the tumour that had begun growing again. Except this time it worked! The small bit of tumour left remained inactive for quite some time.

But a new challenge presented itself: we discovered I had developed scoliosis and kyphosis (fancy medical words for curving of the spine). So, at the ripe young age of two, I now had to wear a Milwaukee Back Brace - 24/7. The brace somewhat looks like some type of medieval torture device (at least that’s what I thought). It had a plastic girdle around my torso and a metal rod up the front and two metal rods up the back, with a metal ring around my neck (You can google “Milwaukee brace” if you want to see a picture of one.) I wore the brace for twelve years.

The brace was the type of thing you couldn’t hide - it was noticeable. And kids, especially elementary kids - well, they definitely noticed it. I always was so self-conscious of it because people would stare. Literal strangers would come up to me in the store and ask me, “What’s that thing around your neck?” I never quite knew how to answer them. My brother once told me to tell them, “I broke my neck skydiving.” I never got brave enough to actually say that. :-) I usually just shrugged and said, “It’s a back brace.”

Due to the brace, I was very limited in what I could do physically. I wasn’t able to do “normal” kid stuff - like jumping on trampolines, running more than a few meters, or anything like that. Even sport activities were not really a possibility. But you know what? People with physical limitations still find a way to have fun. I somehow managed to climb trees - so I did that a lot! I could ride my bike. And swim - I definitely could swim. The only time I was allowed to not wear the brace was when I was in water - so swimming, baths, and showers were my favourite pastime.

Everything was going just fine until I was thirteen. I was at one of my yearly check-ups with my orthopaedic surgeon. I had to see him every year to check the curving of my spine, and see if the brace was doing its job. I had gone in to this particular appointment convinced that this was going to be the day that he would say, “Throw that brace away! You don’t need it anymore!” Only he said the exact opposite.

The brace was not doing its job. The curve was becoming too severe, and I needed surgery - and soon. I remember sitting there, trying to understand what the doctor was saying. (In my mind he started to sound like the adults in the cartoon Charlie Brown - “Waawaa Wawa Wa...”) Everyone started to cry - my mom, dad, me... Even the medical resident started and had to leave the room! I was SO disappointed. This was NOT what was supposed to happen.

Within just a few weeks, I was in surgery. Usually, the solution to this problem is to place rods in the back along the spine - keeping it from curving any more. But the doctors wanted to try an alternative technique to secure the spine. Instead of rods, they would remove one of my ribs and fuse it to my spine. As with any surgery, there are risks - but there were definitely a lot with this one.

The actual surgery went well, but the recovery was terrible. I almost lost my life during that time due to complications. It was terrifying for my family - but we made it through, and I eventually did recover. The best part was that the surgery worked! My spine stopped curving, and, within just over a year I was able to kiss my brace goodbye for good! I tell you - that was one of the HAPPIEST days of my life (December 5, 1996)! I still have a little mini celebration in my heart every year.

Life was pretty good, until almost two years later when I was fifteen. I woke up to get ready for school but, when I tried to stand up, fell immediately to the floor. I had shooting pains going up and down my legs, and I could not stand or walk. It was scary. I had an emergency MRI which revealed that the tumour had grown again. I needed surgery.

A month later I was back in surgery for the tumour. Again, they removed all they could but still had to leave a portion there because of its close proximity to the spinal cord (It was directly on the cord.) But as of the writing of this in 2020, that tumour has not changed at all, nor has it given me any trouble. We pray it stays that way.

The actual disease I have that caused all these health issues is a genetic condition called Neurofibromatosis 1 (NF 1). NF can cause tumours to grow all over the body, usually on bundles of nerves. I do have quite a few other smaller tumours all over, but we only deal with them once they become a problem. One such tumour in my right armpit/shoulder started giving me a lot of trouble (weakness and tingling/numbness in my right arm and hand) in 2011, when I was pregnant with my youngest daughter. So shortly after she was born, I had another surgery to remove that tumour. What we thought was a small one actually ended up being the size of a grapefruit!

But apart from the surgery on my shoulder, the years from age fifteen to thirty-one were actually really good years! I finished high school, went to college, got married, and had four children. Oh, I had headaches and back pain - often. I tired easily. Even though I didn’t wear my brace anymore I still had a lot of physical limitations. But they were still some really good years. I thank God often for those “normal” years.

It was just about a year after the birth of my youngest child that I started to have trouble again. I have always walked with a limp - but the limp became more pronounced. I would trip a lot more often when walking and had to start holding on to something when I walked. At first, I thought my tumour was growing again. So we went to see my doctor.

The tumour was not causing the problems, but rather pockets of fluid (called a syrinx). The pockets were formed on my spinal cord where the tumours that had been removed once were. The fluid was causing pressure on the cord, therefore affecting my walking. The way to address these was to go in surgically and drain the fluid and install a shunt to keep the fluid draining.

In June of 2015, I had surgery to place the shunt. It went perfectly! I recovered very quickly - was home just two days after surgery. I was excited to have that taken care of, and we went on with our lives. But about ten months later the same problems again with walking appeared. We discovered that the shunt was not working properly, so in June of 2016 I had surgery again

to try to fix the problem with the shunt (In case you have lost track, this was surgery number seven.)

The doctor successfully fixed it - a little too well! I did not recover from that surgery quickly at all. I had the worst headache I had ever felt - really the worst pain I have ever felt. I could not sit up and could only lay on my left side. I stayed like this for almost three weeks before I went back to the hospital and had to have surgery again. We found that the shunt was draining the fluid too well, and I now had no spinal fluid in my head protecting my brain! This surgery was to put in an adjustable valve so that we can now control the speed in which the fluid drains.

Immediately after that surgery, my headache was gone! I could sit up and eat! I felt amazing!!! Except for one thing - I could not walk very well. I had to use a walker, and even then it was extremely difficult.

During this time, my family was going through some big life changes. My husband did not have a job, and we did not have a place to live. We travelled around much of North America, staying with various family members, all the while me trying to work on my walking and getting physical therapy when we could. After almost a year, we finally got settled, which allowed me to start seeing a physical therapist regularly. With every session, I worked my hardest, convinced I just needed to try really hard and be consistent and my legs would regain strength and I would walk independently again.

In March of 2018, I woke up one morning and grabbed my walker to get out of bed. I tried to stand up but just fell back down again. I tried several times to get up, but each time I fell down. I said to my husband, who was getting ready for work, “I can’t do it. I can’t stand up at all.” Little did I know the night before when I hobbled over to my bed to go to sleep that it would be the last time I would walk.

We did some more testing, and in May of 2018, I was admitted to a Spinal Rehabilitation Center (in a town about 45 mins from our home) to do some intense physical therapy. I stayed there for five weeks, having therapy sessions several times a day, five days a week. It was tough being separated from my family for so long (I did get to go home on the weekends), but we were willing to make that sacrifice if it would help me walk.

I had wonderful hopes of how I would be wheeled into that rehab center in a wheelchair, but, after some time, would walk out of there on my own two feet. So I worked hard during those weeks. It was tiring and difficult, but I was determined. After a few weeks and seeing no improvement, my hopes started to fall.

And then the day came when my doctor walked into my room as I was getting ready for the day. This was not unusual - the doctors and patients form a tight bond at this rehab place, and the doctor usually came to my room to chat several times a week. But this time, it was different. She sat on the edge of my bed and started explaining how she and several other doctors have been studying my MRI scans and reports from the last few years, dating all the way back to 2010.


It was then that she said those words to me - the words that somehow, deep down, I knew were coming. She told me it was time to “switch the focus of my therapy from walking again to learning to navigate life in a wheelchair.”


I sat there, quiet for minute, as she went on to explain how they had come to that conclusion. In short, my spinal cord had experienced too much trauma over the years, and now it had simply given out. There was nothing they could do. I would not walk again.


We chatted for a while longer, and then she left, leaving me to sit there and let it all sink in. I then called my husband, and we began to grieve this news together.

I spent two more weeks in the rehab center where they taught me how to do things from a wheelchair. I ordered my custom chair that would fit me best, and then I went home to start life with my new normal.

But the story doesn’t end there. The next year I still was having issues with the shunt. We could not find the right setting at which the spinal fluid would not back up or drain too much. When the fluid is backed up, I have intense pain in my back and neck, and if it is too low I have intense pain in my head.

In attempting to find the correct amount of flow of spinal fluid, I ended up having three more surgeries - one in September 2018, one in April 2019, and one in October 2019. With each surgery I had some complications with recovery. But, after the last surgery in October 2019, we finally found the correct solution and, as of the writing of this in August 2020, I have not had trouble since.

I am thirty-eight years old, and I can say - life hasn’t really been that easy. Things that come naturally or easy to most are not that natural or easy to me. At times in my life, I have felt like I was sitting on the sidelines, watching everyone else enjoy “normal” life.

But I don’t feel sorry for myself - I never really have. Oh, I would have my moments, but it doesn’t usually last too long. I’ve learned firsthand that we cannot always (actually, rarely) control WHAT happens to us. But we can control HOW we let it affect us. Yes, life can be so difficult. But even amidst all of that, I have SO MUCH to be thankful for.

I have been asked how I can remain happy and positive when going through these hard times. I don’t have any secret solution to getting through. What I do have is my faith. Without my faith in God, I would be a constant mess. God is my strength when I am weak. He can handle the hardship when I can’t. And I also have my family. Family - both blood-related and close friends that I consider related.

I have had a total of eleven surgeries so far. And if the last thirty-eight years have taught me anything, it’s that God will never leave me to walk through a trial alone. He is always with me, He is strong enough to handle anything that comes my way. So I can continue on through life, confidently knowing that whatever is around the corner, God has got it.