When I'm Reminded of My Disabilities Caused by Scleroderma
A few months ago, I drove myself to Starbucks to get a vanilla bean Frappuccino. It is one of the few drinks I can actually enjoy from Starbucks because it is caffeine-free.
About three or four years ago I discovered I had some issues with my heart. These issues caused me to have to have two surgeries and give up a lot of the things I loved, for example: chocolate, caffeine, fried foods – to name a few.
I have been living with a chronic illness called systemic scleroderma for about 16 years now. This disease causes a lot of complications within my body. Heart issues is one of them. I also have some lung and breathing problems, stomach problems, swallowing issues, arthritic problems and skin tightness. All of these issues make my life sometimes unbearable. So, when I find something that I can actually eat or drink, or an activity I can safely accomplishment, I am very excited to give it the old “college try!”
In the drive-through line at Starbucks I waited patiently for my turn to pull up to the window and order my diet friendly, icey goodness. Inch by inch, my car finally made its way to the order speaker, I placed my order and pulled up to pay. I exchanged my credit card for a receipt with the cashier and waited patiently for my drink to be made.
Now here’s where the tricky part comes – because of my illness, it makes it very hard for me to grab onto and hold things in my hands. Scleroderma causes your skin to tighten, which then causes you hands to contract or curl up like claws, making it very hard to grip things and open your hand completely. Normally when I order things through the drive-through lane, I almost never order any type of beverages because of this exact predicament. I am deathly afraid I will drop my beverage and be embarrassed completely, and never return to said drive-through again. However, in this case, the only thing I ordered was a beverage – so I was sort of up shits creek without my paddle.
As I sat there and waited for my delicious drink to be made, all of these scenarios ran through my brain – all of which ended in my mortification and me never using another drive-through lane again in my lifetime! It even occurred to me to speed away and forget the drink all together, but I really really wanted this specific sweet, frosty, iced drink, so I quickly pushed that idea out of my mind altogether. What was I going to do? I had to come up with a solution and quick.
Anytime I am put in a situation where my illness forces me to come face-to-face with the disabilities and the changes it has brought into my life, one thought always pops into my head – despite my best intentions.
“Why can’t I just be normal like everyone else?”
Anyone that knows me knows I am anything but someone who feels sorry for themselves or their situation. I always try to find the positive in any situation, and I believe that negativity has no place in my life. But, that doesn’t mean that I don’t have normal human reactions. Sometimes I get frustrated with my disease and think about how easy my life would be if I didn’t get scleroderma – I would be a liar if I told you every now and then those thoughts didn’t creep into my brain and cause me to second guess my entire life
I have found with scleroderma, everything is trial and error. It is such a rare disease that most of the time there really isn’t any kind of handbook or survival guide to skim through to get ideas on how to make your life easier and more productive. So, mostly I think on the fly and if it works, great. I go with it. If it’s a failure…Well, then, I know exactly what not to do in a repeat performance.
Three minutes went by and still I had no idea what to do to find a solution to my very immediate problem, and I was all out of time because the cashier was approaching me quickly with my drink in hand. As she slid open the drive-through window with a smile on her face, she kindly said, “Here’s your order miss.”
I said the first thing that popped into my brain, “Thank you, I have a hard time holding things. Would it be possible to have someone run it out to me if I pull up to the side door over there?”
“Wait, what? Did that just come out of my mouth?” I thought just as I was waiting for her to laugh in my face and throw the drink at my car. But, instead she said in the nicest voice possible, “Of course, we can definitely accommodate you ma’am. I will run it out to you right now.” After she replied I found myself speechless.
There has been so many times where I have asked politely for special accommodations because of my illness and been told “absolutely not” or have been looked at like I was a freak or a liar. To have someone finally not question me or look at me with pity was a feeling I was not used to experiencing. I mumbled out a, “Thanks,” and pulled up to the doorway at the side of the building to wait for my order. She was outside with my drink within seconds and even opened my passenger side door for me and put the drink into my cup holder of my car. After she shut my door and I started to pull away, I looked in my mirror and say her waving to me and her lips moved and she said, “Have a great day.”
I burst into tears as soon as I made it to my first red light.
Why you ask? I really could not tell you. Maybe I was overwhelmed by how sweet and how nice she was to me when I normally get a different reaction from people when I ask for assistance. Or, maybe it was because I felt sad and a little angry to have to accept help from a complete strangers all of the time, just to complete simple tasks like getting a drink from a fast food joint’s drive-through. Or quite possibly it could have been that I was over this disease and the way it always made me feel less than and not like a whole person. Scleroderma was constantly making me feel like the oddball out, the third wheel, the nerd, or the alien from another planet. So that day, I guess it wasn’t any different.
Pride is a strange emotion to feel. At times it makes you feel good , like when you push yourself to complete an obstacle you thought you could never get done. That makes you feel great and proud of yourself that you didn’t give up – even when you wanted to. However, pride can also make you feel uncomfortable. Like with myself and the drink incident. Pride is keeping me from going back because I feel too proud to go back and have to admit to another cashier that I need his/her help carrying my own drink and that makes me feel sad and like I am being petty, which I most likely am – but I just can not bring myself to accept that just yet.
That’s the funny thing about living with a chronic illness like scleroderma, it makes you feel a million different emotions all at once and you have to find a place for each of those emotions. Sometimes that is easier to do than at other times. Like I said before, I am not about feeling sorry for myself. I try at all costs to ban that feeling from my emotion list. But sometimes it sneaks in there and it hits me like a ton of bricks.
The Starbucks event was a great thing. I felt empathy from a complete stranger, which is not so common in today’s world. Not many people will go out of their way to help someone out that they have never met, but this women did and that was amazing. It was also embarrassing and uncomfortable for me to admit to her, and really to myself, that I need help. That I can not do the simplest of tasks and that I am different. Those emotions are hard to swallow sometimes.
No one wants to feel like they aren’t capable of taking care of themself. That is something I definitely need to work on. It took me almost 10 years of living with scleroderma to be able to accept that I am not the same person I was before I got sick. But, I did, and in doing that it made me stronger and more confident.
That is not to say that I don’t have set backs every now and again. Sometimes I go back into my feelings and to a time in my life where I felt completely alone, insecure, scared and embarrassed. That’s the funny thing about emotions – they sneak up on you when you least expect them, but I refuse to let this disease dictate my life, my emotions, and my actions.
It took me some time, but eventually I built my courage back up enough and went back to the Starbucks. I went back to that same drive-through, ordered the very same drink, and believe it or not, was waited on by that very same cashier. She remembered me, and amazingly enough, brought my drink out herself again and put in into my cup holder for me. However, this time instead of driving away embarrassed and in tears, I smiled at her told her, “Thank you very much,” and left with a big grin and feeling uplifted and confident.
We want to hear your story. Become a Mighty contributor here.