I was nine years old when I lost my leg to bone cancer. When living your life as a kid looking to explore, it’s difficult learning how to grow up in a world not made for amputees. Walking around school, having my leg come off in social settings, while playing sports like hockey, baseball, lacrosse; it was just a part of life in high school. Over time I learned how to become comfortable with myself, but it was a long road to get to that stage. If people had a problem with me playing, it was something they just had to get over. This Thanksgiving, I get to look back at those times and see how far I’ve come.
Me at the age of 9 shortly after I was diagnosed with bone cancer.
Since then, I’ve been through college, worked full time jobs, but my life hit a big stopping point around a year ago. All the chemo I had when I was younger had caused irreversible damage. My phantom pain to this day is worse than it has ever been. Learning how to live with it has been extremely hard, and at times it’s been unbearable. At times, the pain has been so intense that I felt sick to my stomach. I wasn’t able to work, and things I normally did, such as shooting at the rifle range was put on hold due to the crippling phantom limb pain. I take medication for nerve damage so I can use crutches, but these completely detract you from reality. Nobody wants to live their life like that.
Target shooting is my favorite hobby, and this rifle I’m holding in the picture is very special to me because it is from World War II. It’s an M1 Garand rifle, and my father and I restored it together. I’m really excited to be getting back out on the range.
During my time as an amputee I’ve had a lot of different sockets made for me. They were making sockets with belts when I first was fit. After wearing it for about 20 minutes you were ready to take it off. Since then, I migrated to suction for many years, before moving to liners, which is where I’m at today. The traditional socket was too rigid and became difficult to wear. It was recommended that I pursue other avenues of mobility. I went from becoming a very individual amputee to becoming reliant. I lost a lot of independence, and tasks a lot of people take for granted such as going for a shower, going to work became a chore. When you can’t muster the strength to even get out of bed in the morning it really affects your outlook on life. My life was this way for three to four months, when I could not wear a prosthesis.
Christian Been at De La Torre O&P in Pittsburgh always took really good care for me. It’s important for every amputee to have a good working relationship with their practitioner; someone who can share their life experiences on a personal basis. I would tell any new amputee that a practitioner is asking for a lot of blind trust in allowing them to have the patient’s best interests in mind. You have more of a chance getting struck with lightning than meeting a practitioner that suits the bill, and you need to learn to trust one person with life decisions in a second. You can’t try before you buy, and if you get the impression that they are not hearing you, find somebody else. Christian is like my best friend. This is where it all starts. When I discovered the Infinite Socket, I talked to him about the features and he had the answers.
I learned about the Infinite Socket from an article online about the advancements in prosthetics. I looked at pictures of the many people in it and my initial thought was “what on the earth is this. I’ve never seen anything like this in my 30 years of being an amputee.” You wore a bucket and that was all i knew. It looked like it would fall apart in a matter of steps, but I youtubed it and found people utilizing the tensioning system. I was just amazed, the more I read, the more I was intrigued. I spoke to my prosthetist about how the socket conforms to you. Christian had heard many good things about it, and after long discussions about the medical necessity I was excited to proceed.
It took about two months to get fit with the socket because we coordinated with another amputee to be fit around the same time. From the moment we opened the box, you can tell it was thoughtfully made for comfort. It took some time to get the adjustments made, as I was having a problem with the ischial seat, but I knew it was something special. My first impression was that it felt bizarre. I didn’t have the high lateral wall, and it didn’t feel like the material went up into my groin. Initially walking with it has been comfortably slow going, however, I still marvel at how easy it is to put on and how quickly I can seat in, adjust, and walk. It’s truly a life changer. The bottom of the socket is far more comfortable than my other one, feeling almost as though I’m wearing a slipper. It’s a wonderful product, that I could tell from the moment I put it on, was unique. If you are a new amputee, and you’d never worn a traditional socket you would find this pleasant for sure. It gives your limb the opportunity to breathe.
I know that it will take awhile to get accustomed to, as I’ve known and conformed to the traditional socket for over 30 years. There is an adjustment period where you will feel pleasantly strange. It’s a very forgiving period, where sitting down in a car is a lot more comfortable than with a traditional socket. I can tell you for sure that I’m not giving the socket back. When it breaks I’m going to get another one! That’s a testament to how much I love the feeling of the Infinite Socket.
I’m 40 years old now, and the first thing I’m proud of is that I don’t really think about the small challenges that amputees face every day anymore. Foremost, I’m immensely proud that I beat the odds at such a young age to celebrate my 40th birthday. The doctors gave me a 50% chance of survival, but as an amputee I’m proud of the independence that sockets give you. I now have that get up and go spirit again. I don’t need to think about being an amputee going throughout my day, and the fact I can live my life again is a major accomplishment.
As far as things I’m thankful for this Thanksgiving, I would like to mention that I’m very thankful for my girlfriend for her unwavering support through what has been a very difficult year for me. She’s been my rock. I’m also thankful that due to the Infinite Socket, I’m now able to be out of bed a bit more and moving around, working towards gaining my independence back. It’s just difficult to describe how much your life can take a turn for the worse when you lose that independence as an amputee. While I’m not where I want to be yet, I feel that I’m making progress, and it’s a wonderful feeling. I couldn’t be where I am now without my Infinite Socket.
I’m hopeful that I can regain my health and the ability to live my life, completing the goals that I set out to do before i was diagnosed with neuropathy. I want to finish my criminology degree, and refuse to let the pain stop me. I want to get back on the road of more independence without the pain I feel every day.
My CPO, Christian Been, myself and LIM CPO Dana Rock after being fit with the Infinite Socket.