When I Was Forced to Face the Reality of Permanent Disability

“I do not want my picture taken in my wheelchair please!” were the first words out of my mouth as we started the Local Stepping Out for a Cure Scleroderma Walk a few weeks ago. I know it sounds extremely vain of me to not want a simple photograph snapped of me, but in my mind I just felt like I wanted people to only see how I look on a daily basis, which is standing up smiling, not sitting in a metal wheelchair being pushed by my dad!

My family and I had been in preparation for this fundraising walk for at least three months. I had gathered a team of about 10 people, mostly family and close friends. I came up with a clever name for the team (Gietzen’s Scleroderma Squad) and we had raised over $500 collectively for the cause. I was so excited to be participating in the walk this year. It has been quite a few years since I had last done a Scleroderma Walk.

 

After I was diagnosed with scleroderma 16 years ago, I reached out to the local scleroderma chapter asking if they needed volunteers. I was very interested in helping young adults like myself who were living with this disease and who were maybe all alone or felt lost and didn’t know what to do first or who to turn to. I had gone through all of those emotions and come out the other side, ready and willing to advocate. I wanted to reassure others like myself that “it’s OK and they are not alone.”

Unfortunately, the president of the local scleroderma chapter at that time told me they “had enough volunteers and didn’t need any help!” To say her words left a bad taste in my mouth afterwards is an understatement! I was furious that a support group who was built to help and support others would tell me basically to eat rocks! So after that I distanced myself from the local scleroderma chapter and started to advocate on my own.

Fast forward 10 years, and I now had a very successful Facebook page called “Staying Alive with Scleroderma” that I was very proud of. I had just started a blog and a Scleroderma Support Group page on Facebook for teens, young adults and their loved ones called “Scleroderma Super Starz.” I was doing very well but I did feel like I could be doing more. So I started to touch base again with the local scleroderma chapter. To my surprise, there was a new president and she was very, very nice. I went to one support group meeting and the rest was history!

All of the women were so lovely and supportive and actually excited to have me there, because they had seen both my personal Scleroderma site and my blog and knew who I was. The 2017 Scleroderma Walk was the first event I actually participated in locally since 2009! They did a fantastic job setting it up and the turnout was unbelievable.

I was so beyond excited to be going and to be helping these amazing women and men raise money for a great cause! The big disappointment was that two days before the walk, I fell and broke my pinky toe.

I had no idea that breaking your toe would hurt so bad! I could barely walk and that was a big problem, seeing as I needed to walk for the Scleroderma Walk in just a few short days. Well, come the day of the walk my toe was still feeling horrible and I could barely make it to the restroom on my own. I was going to need to use my wheelchair, which I was not very happy about at all! As the walk came to a start I sat down in my wheelchair and my dad started to push me, following the rest of my team around in a line.

I felt so uncomfortable to have everyone whom I’d gotten to know and grow close with see me in a wheelchair all because of my dumb toe. I know to them it probably was not a big deal whatsoever but to me, I was extremely embarrassed. To make matters even worse, as we were making our way through the mapped out area designated for our walk, volunteers were taking pictures of walkers and their teams and that made my stomach sink. I did not want any pictures taken of me in a wheelchair and I made that abundantly clear when the first volunteer stopped us to snap a shot of us walking by. I will admit my reaction when he politely asked us to smile for the camera could have been a little nicer than “Absolutely not! Do not take a picture of me!!” I think I was just in a panic as to how I was going to get through this walk and not end up with a picture of me in my wheelchair posted all over social media the next day.

When we finally finished the walk and I was able to get out of the wheelchair and stand on my own two feet again, I felt so much better. I also felt like I needed to apologize to that poor boy who just wanted to take my picture like he was asked to do.

I really cannot tell you why I was so adamant about not having permanent memories of me in my wheelchair captured. I am usually very comfortable in my own skin and despite having hands that look very deformed and a small tight mouth and red spots all over my body, I am always OK with myself and I never feel embarrassed about looking different. But being in the wheelchair just hit me in a way I had never felt before, and I couldn’t figure out exactly why!

It took me about three days to finally figure out why I acted so strangely about having my picture taken in my wheelchair. I was sitting on my laptop looking over the post I was writing for my social media page recapping the walk and how amazing it was, when out of nowhere the thought popped in my mind that my issue wasn’t with having other people seeing me in my wheelchair and judging me. The reason why I was so upset that my picture being taken was because I did not want to see myself in the wheelchair, incapable of walking freely and dependent upon someone to help me with pretty much everything!

I couldn’t face the reality that a wheelchair is a very real possibility for me if my disease keeps progressing like it has been for months now. I don’t know what I would do if I lost the majority of my independence and needed a permanent wheelchair, but I do know I am absolutely not going to act like how I did at the walk and be embarrassed and act rudely to people! That I promised myself would never happen again. I am better than that and I will face any challenge, no matter how difficult, in a positive and strong way.

Scleroderma may change me in a physical sense, to the point I might eventually be unrecognizable, but it will never ever change my heart and my spirit! I will never allow this disease to change who I am at my core. Scleroderma might very well take my body and my independence away from me, but my heart, mind and soul…those it will never take away from me!

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