A Journey With Cerebral Palsy

An iced coffee is the only way to go. Even when the temperature dips below 40. Those at the coffee stand probably think I have gone crazy. But, the reason I’m getting an iced coffee in cold weather has little to do with preference. My style of coffee has more to do with my disability. Cerebral palsy has an impact on many of the choices I make in life. Many times, it comes down to choosing the easier object to handle. I spent minutes thinking about how things will come packaged. Wanting to understand how something will be served. The answers have bearing on whether I will be able to eat or drink the item. While, the answer often turns out to be positive. The comfort involved in having the item also factors into the equation. How challenging might it be to perform the physical task? It would be great to order whatever looked yummy on a menu. Being able to let go of the concern over physical management. That simply hasn’t been the way I walk through life. A hot cup of coffee comes served in a cup I struggle to physically operate. The liquid almost always spilling out the small hole cut in the lid. The feeling of spilling the drink with each step I would take, or every time I would reach to lift the cup. The idea of the challenge caused such frustration, I never drank coffee. 

While growing up, I thought coffee was only served hot. The drinking of a coffee often involved a coffee cup. Cups I would always consider as being small in size. With a small handle attached to the side. They weren’t exactly conducive to being held with my hands. I would watch people grab hold of the handle and pick up a hot cup. They had the ability to balance the steaming liquid inside, by just hold the handle. I struggled to imagine a way of holding a cup without placing my hand fully around the outside. Still, I remember the fascination I had developed over watching people drink coffee. Leading me to develop the desire of wanting to drink out of a coffee cup, just like the adults. I recall making attempt with hot chocolate inside of a grown-up’s coffee cup. Having marshmallows sitting on top of the hot liquid. They would act as a stabilizing force for the hot chocolate below. But, even with the added stability, it didn’t work out for me to balance the drink. With cerebral palsy taking its toll on my wrists and hands. I was unable to lift the coffee cup full of hot chocolate to my mouth. The trembling of my hands and the heat of the drink, made it impossible. The use of a straw would help the challenge, as I would wait for the drink to cool in temperature. Then, enjoy my hot chocolate without having to lift the cup from the table. 

Problem solved, right? It would seem like getting a straw for my drink would be an easy fix. The thing was, no one else around me needed a straw. All of my peers could lift the coffee cup of hot chocolate by the handle. Having cerebral palsy causes moments of feeling different. Some of these moments feel more challenging. As the impossibility of balancing a coffee cup has been remembered as one of the first. The situation brought about some of the first feelings of isolation. Especially, when I might be away from my family members. Playing at a friend’s house and all us kids would be offered hot chocolate. I always felt as though it was best to politely decline the offer. Because, the hot chocolate would most likely be served in coffee cups, and I wouldn’t be capable of managing the drink. It left me feeling like an outsider with my friends. The emotion of isolation due to something I had no control over was real in those moments. Though, I found myself always trying to cover up any pain inside my emotions. Attempting to make it appear like it wasn’t any big deal. The sad thing was, I had probably convinced myself it wasn’t a hurtful situation. Like I had cerebral palsy and didn’t deserve to be totally included. There was truly no one to blame for those feelings of isolation. So, I tried to shake off the emotion of sadness. 

The challenge with having a cup of hot chocolate or a hot cup of coffee, didn’t end at the container. Something would happen to me when the hot liquid hit my mouth. The occurrence was never made much sense, because I didn’t notice it happen to others. When the hot liquid hit my mouth, it felt like my entire body would jolt. Like a flash of lightning had shaken my entire body. My neck would snap backwards in a pretty violent manner. Making holding onto whatever cup I was drinking out of, problematic. Many a spill happened from the situation of sipping a liquid that was too hot. Making the drinking process even more complicated. I have tried the tactic of waiting for the drink to cool off in temperature. But, found that most of the time, it becomes challenging to tell. Sending me into a situation where I think the coast is clear. Only to experience the jolt through my body when the liquid hits. I have learned over time that the uncontrollable reaction is most likely muscle spasms. Something cerebral palsy causes at different times, throughout my body. That feeling of my head jerking back has caused embarrassment. Another situation I don’t really see in other people, when handling a hot drink. My solution has been to shy away from any of the hot drinks. Saving me from one of the occurrences bringing about that feeling of isolation. 

All of these challenges with hot drinks had led me away from drinking coffee in life. That was until a dozen years ago. I was stopping for gas to begin a short road trip. Feeling like something to drink would be helpful, I ventured inside the station. Without any of my usual thirst quenchers looking appealing. I spotted a chocolate coffee drink and thought, why not. It was a mocha from Darigold sitting on one of the refrigerator shelves. I had never been one to drink coffee. Not really liking the taste. But, more so, not wanting to deal with the handling of the hot liquid. The mocha drink I had stumbled across in the gas station was awesome. I enjoyed every last bit of the drink, as I rolled down the highway. Only to find out later, I could get almost the exact drink at any coffee stand. It was simply referred to as an iced mocha. The drink was like chocolate milk with some coffee. All poured over ice, with a lid, and a straw. It would be relatively simple for me to order and handle. My mind was blown. From that day forward I became an avid coffee drinker. It seems strange that not being able to drink coffee could make me feel left out, but it did. I feel like most everyone in life drinks coffee. As a society, we often meet friends for coffee, have dates over coffee, and make coffee runs in the office. Drinking coffee seems so much a part of our lives. For years, I felt isolated from the ability to enjoy those moments. Believing the only way coffee was served, was hot. And I grew up in Seattle, evidently living under a rock.

The discovery of that iced mocha did a lot to change things. Finding the iced coffee made me feel a part of life in ways I hadn’t felt prior. It led me to having the ability to drive through a coffee stand. Like so many people heading on their way into their day. Now, there was no reason to fear being handed the drink. It wasn’t going to be a hot liquid in a cup challenging for me to keep steady. My coffee drink would be poured over ice, which helps keep liquid balanced, with a sturdy lid, and a straw. Not unlike any soda drink to be ordered at a fast food drive through. I had been handling those drinks for years. The feeling of grabbing a coffee to begin a day, might sound like a simple thing. But, for me, it has significance of another overcome challenge. Finding another compromise in life, bringing me out of my emotions of isolation. When I order my iced coffee in the middle of the winter. On mornings when the temperature dips under 35 degrees outside. I can get some strange looks, with everyone bundled up in thick winter coats. They might think I have gone a bit crazy. The funny thing remains how thankful I am to have the ability to receive the iced drink. It makes me feel a little less alone in my challenges with cerebral palsy.