As usual, my body had the worst possible timing before my vacation. I had made you aware that I was going on a road trip to visit my family and give a couple of Roll Models talks in Indiana, and I had planned to take off on August 2nd. Of course, after being completely healthy for the last nine months, in the week before I am planning to leave I catch a nasty stomach virus. Even though I was starting to feel better on July 31st, I still had to make the tough decision of whether it was safe for me to take a 12 hour road trip when I had spent the last week hugging the toilet. As disappointed as my family and I were to do it, we decided that it just wasn’t worth risking my health to make the trip, so I cancelled it. Fortunately though, my parents and sister were able to adjust their plans and come out to Kansas City to visit me instead, so I still got to see my family at least. Better yet, I was able to give one of my Roll Models talks via webcam, so I was still able to share my message as well. All things considered, for a cancelled trip it worked out about as well as could be expected, which reminded me of how good my family and I have gotten at making the best of the bad situations presented by my disability.
One of the most difficult aspects of living with spinal muscular atrophy is that I can go from completely healthy to extremely ill or injured in a moment’s notice. This disease does not care what I have planned, where I am, or who I am with when it decides to rear its ugly head and wreak havoc on my life. I missed my University of Notre Dame commencement ceremony (where President Obama spoke), have celebrated the New Year in the hospital, and have even spent my birthday bed ridden with a back injury. As tough as these difficult situations were to deal with though, my parents, and now myself, have always made it a point to work through these moments in the most positive, constructive way possible. By developing the skills to cope with these incredibly disappointing scenarios in a productive way, I have been able to prevent these setbacks from having a major, negative impact on my life.
When I was about 12 years old, my family took a vacation during the first week of June visiting the shore of Lake Michigan. This is one of the most beautiful areas you will find in the Midwest, especially in early Summer when the trees are green and the lake is still cool and crisp. We had planned to spend a few days at a cozy, rustic bed and breakfast, while taking in the gorgeous scenery and exploring the various shops and restaurants dotting the lake shore. After spending our first full day in the area enjoying the picturesque landscape, filling our bellies at a small, authentic German restaurant for dinner, and getting a good night’s sleep, we woke up ready for day two. Before leaving the bed and breakfast to see what adventures this new day would bring, my family and I decided to take a dip in the private hot tub in our room. After donning my swimming trunks, my parents picked me up and began carrying me over to the warm, bubbling water waiting to massage my body. I never made it to the water however, because as soon as I was lifted off the bed a sharp, searing pain shot across my lower back.
The pain was so excruciating that I could hardly breathe, but from my sharp gasp for air and the wide-eyed look on my face my parents immediately knew something was wrong. I did manage to spit out the words, “Oh God! My back, my back! Put me down!” After returning to my bed, catching my breath, and letting the waves of piercing muscle spasms subside, I was finally able to communicate with my family and take stock of my situation. When you live with constant, chronic pain you become quite the connoisseur of the subtle differences between various types of hurtful sensations, and the way the pain felt and acted when I moved suggested that this was a strained or pulled muscle. While muscle strains are very painful, they are not life threatening and pose little to no threat of doing any lasting, permanent damage, which means that if you can control the spasms and discomfort using ice, muscle relaxers, and pain killers you are good to go. Obviously since we were on vacation several hours from home, we all wanted this to be the case so we could enjoy the rest of our trip. As much as I wanted to pop a couple flexiril and some vicodin, strap on an ice pack, and finish our vacation though, when you have a metal rod fused to your spine with over 30 steel wires, you have to look at any back injury as potentially life threatening. So as much as I hated for my family to have to cut our trip short, to be safe I needed to get home where my doctors could get X-rays and MRIs of my spine to ensure I was alright (and I was thankfully).
Despite the fact that I had ruined our family vacation before it even really got started, and the fact that my family would have had every right to blame and be angry with me, not once did they make me feel like this was my fault. Even though I felt extremely guilty about having to cut our vacation short, not once did my family make me feel this way. All they were worried about was making sure that I was ok. By focusing on the well-being of our family, not only did they lessen my guilt at the time, but they also changed the way I feel about this moment from my life. By focusing on the important things like our family’s health and the fact that we were together, I can now look back on this painful ordeal fondly. It reminds me of how much my family cares about me, and how they are willing to deal with whatever obstacles my disability throws at me in order to keep our family together. It doesn’t matter what they may miss out on or have to sacrifice, I know that when my physical limitations turn my life upside down that my family will do whatever it takes to make the best of the situation and keep us together.
While my family and I were forced to develop the skills to deal with the adversity that comes with my disability, this ability to roll with whatever life throws at you and focus on what is really important in life is something every family would benefit from. You can turn what looks like a ruined vacation/business trip into a “stay-cation” with a webcam presentation, if you develop the right tools and mindset. It is so important to remember that compared to things like family and your health, missing a vacation or canceling a business trip is not such a big deal. Even though I have missed out on numerous events throughout my life due to my disability, the bond and connection my family has forged in overcoming these hardships is worth far more to me than any commencement ceremony or vacation. The closeness we share and the enormous sacrifices we are willing to make for each other are something I would not trade for the world. Knowing that I have this support is what allows me to live the fulfilling, independent life that I do, knowing full well that at any time my disease could completely upset my world. When this happens though, and it will, I know that I have four people that at the drop of a hat will do whatever it takes to keep my life on track. With support like that, I know that I can overcome anything that this dreadful disease can conjure up.