To elaborate a bit on my previous post, I thought I’d further describe two important relationships in my life: My best friends Mike and Matt.
We were together since Freshman year of college. The three of us had attended MDA Summer Camp together since we were kids, but had never really become acquainted until our first week at UW-Whitewater. Mike and I lived in the same dorm building and Matt (along with his adorable service dog, Max) soon moved from his dorm to join us. We were about as tight as any three friends could be. They were among the few, close friends with disabilities that I had. We talked about anything and everything, including topics that were rarely discussed within my able-bodied circles. It was a nice release to have like-minded (and bodied!) friends to talk with about related experiences and challenges.
Mike and I both have Spinal Muscular Atrophy (SMA), a genetic disorder that ultimately results in weakening of the body’s voluntary muscles. Though everyone with SMA progresses differently, there are many commonalities between us. We both developed pneumonia easily, so it was fun to exchange tips on things like, “How to cough most effectively” or “What to drink to help loosen secretions.”
Matt’s disease is in a similar category to SMA, but there are few huge differences. Duchenne Muscular Dystrophy (DMD) progresses much faster and affects the heart muscle. Despite today’s technology, it isn’t uncommon for a young man in his 20s with DMD to die of sudden heart failure.
We were together all of the time. Although we each had our own separate interests and activities to participate in, our free time was generally spent together. Each of us even had remote access to each other’s rooms. I would often return from class to sit and watch TV in Mike’s room while he was away at class or work.
Our Senior year, the three of us decided to get an apartment together. This presented a unique set of challenges, especially in a town whose university touts its superior accessibility for those with disabilities. Finding an apartment suitable for three power wheelchairs, a dog and with the capability to accommodate our special needs proved to be more of a challenge than we had anticipated.
Once we had decided which apartment was the best fit for us, we ended up having to fight the property management on not one, but two issues. Since the majority of apartments near campus were specifically for student housing, it was a common practice to not allow tenants to have dogs. Because Max is a certified service dog, we explained that the “no dog policy” didn’t apply to our living situation. They fought us on the issue; we won. They also challenged our need for automatic doors. Since none of us were physically capable of opening most standard doors, it was important that we had these to enter and exit our apartment and the complex remotely, allowing us to independently attend class. Once again… they fought us, but we won. Mike’s DVR thankfully paid for the two automatic doors and the installation.
The two year period that we spent in that apartment together was one of the greatest times in my life. For the first time in our lives, we were truly independent. No more dorm rules, summers with the parents, or having to call a taxi to transport us to Walmart… We were free. Living within the same walls proved to strengthen our relationship even more. We were no longer merely best friends, we cared for each other (and fought) like we were siblings.
On August 26th, 2008, everything changed.
The beginning of the fall semester was approaching and Mike, being the busy-body he was, was off to attend a picnic welcoming incoming Freshman. Matt was visiting his parents, so I was preparing for a quiet evening at home by myself.
Minutes after Mike’s departure, I heard an extended car horn, tires squealing, and then a crash. Knowing that he had just left, I called his cell phone to find out what the commotion was about.
No answer. I called again… Then again. After the third unanswered call, I heard sirens.
Now that I’m becoming increasingly alarmed, I decided to call our friend Heather, who conveniently lived a block away. At the time, I was “stuck” on my computer in my bedroom. In order to properly use a computer mouse, my wheelchair’s joystick must be swung away from my reach, rendering me immobile until someone moves it back into “driving position.”
Once Heather arrived, she explained that Main Street was blocked off and that the area was riddled with emergency vehicles and police. We both took a deep breath, prepared ourselves, and made our way to the street outside. She wasn’t exaggerating. Within the 10 minutes since the crash, it seemed as though every area police officer and EMT were out on the street. My eyes darted around the chaotic area until they fixed on Mike’s upside down wheelchair in the crosswalk. My heart sank into my stomach as we approached the curb. I’m not exactly sure what went on up until I was speaking with a police officer, explaining that I was his roommate. He explained that Mike was awake and simply complaining of arm pain. Thank God.
After removing his chair from the middle of the street, calling his parents, and evading journalists from our campus paper, The Royal Purple, we followed Mike to the hospital. A few of Mike’s friends, along with his parents, met us there and we waited for hours to hear the news: Mike had several broken bones, but was okay. They were going to Med Flight him to Madison for surgery to repair his broken hip, but we could visit him the next day. We were all allowed to visit him quick before his flight. I teased him, saying “I think from now on I’ll be going first when crossing the street together…”
He would never let me go first when crossing the street. His claim was that because I’m from a small town and he grew up near Milwaukee, he had (literally) more street smarts. Pfft…
His groggy reply in the ER that day was, “I’m going to push you off of a bridge.” Classic.
Heather and I left the hospital in good spirits that night. We were excited to see him again the next day.
The next morning however, Mike’s mom called to inform us that we shouldn’t come visit quite yet. His blood pressure had become abnormal the previous night, so they had to put him in a medically-induced coma. His oxygen levels also dipped for several minutes…
We visited when we could. We would take turns reading the posts people wrote on his Facebook group page. He was never conscious, but I think we just hoped he could hear or even feel us. As one week turned to two, he was showing slight progress. At one point, I remember a celebration for him developing the hiccups. I guess it had something to do with brain function…
September 9th, I awoke from a dream that Mike had passed away. I was so relieved once I realized it was all a dream. I told my friend Sarah about it and we chuckled over it after I replied to Sarah’s notification of a voicemail from Mike’s mom, “Oh no! What if my dream came true!”
I listened to the voicemail… “Hi Lauren. It’s Julie. Call me when you get a chance.”
At this point I was mildly alarmed. I called her back. “Is someone there with you?” was all I heard before the walls crumbled and I started gasping for air…
He had suffered massive brain swelling, and eventually bleeding. He was gone. After two whole weeks of improvements, that was it.
Matt and I finished out the school year, then moved onto a newer, nicer place with Sarah, my current best friend and former aide. Over the next year, we each developed relationships: Sarah met her now-husband, Dave; Matt met his now-wife, Lindsay; and I met my husband, Jerry.
Once our lease ended, we all went our separate ways. Matt and I would chat online often, keeping each other updated on our lives. I had moved 30 miles away with a friend to be closer to Jerry and find work. He and his wife were living in a small town 40 miles away.
On March 23rd, 2011, Matt died at home. Lindsay was there with him… Her last words to him being, “I love you.”
Like many other guys with Duchenne before him, Matt had suffered sudden heart failure. He was 27 years old and left behind a 2-month-old, beautiful son, Landon.
We displayed a photo of Mike and Matt on a memory table at our wedding reception, along with Jerry’s brother, dad, and my grandma. Both of the boys’ parents were in attendance, along with Lindsay and Landon.