August 26, 2016 - quite possibly the worst day of my life. It was on this day that I was diagnosed with Multiple Sclerosis. Here is my story.
My wife Kristen and I were on vacation celebrating our 10 year wedding anniversary! We were in the Outer Banks of North Carolina for a few days, as a gift from Kristen's parents. We drove down from Richmond late on a Friday night, and arrived at our house around 11pm. It was a cute little house. It had a big deck on the front, and a hammock out in the yard. It was vacation away from home, and we were together, and we were alone. Our son Carter stayed behind with his Grandparents, and they were coming down to meet us after a few days. Kristen and I were thrilled to have some time to explore on our own, and spent the next day driving around to all the little beach access spots we could find. Really cool to see the random cars pulled over on the side of the road, and the big sand dunes that people climbed over to get a quiet spot on the beach. It was HOT, and we finally went back to the house to cool off around dinner time. On Sunday I woke up not feeling all that great, but we had planned to take the ferry from Cape Hatteras over to Ocracoke Island, so I sucked it up and went. It was even hotter on the ferry and walking around the island. My eyes were acting up a little, and I found myself walking around with one eye closed for seemingly no reason. I didn't have sunglasses on, so I figured it was probably just too bright. After an hour ferry ride back and then another hour in the car up from Cape Hatteras, I was exhausted by the time we got back to the house. The island though, was really cool. Lots of little shops and restaurants. All the locals drove around on golf carts, as there really isn't a need to have a car. The thought of living on an island, when the only way to get back to the mainland was a hour long ferry ride, was kinda strange to me though. On the other hand, it would be pretty cool to own a small shop, or a restaurant. No, ice cream. Kristen & I have always talked about opening up an ice cream shop that had the real creamy ice cream like back in Syracuse. We've lived in the South for 10 years, and haven't found many quite like NY. The Island Creamery on Chincoteague Island is the only one close. We stopped at a grocery store on the way back to the house, and I could barely stand. Every time I had a chance to lean against a wall and close my eyes for a minute, I did. Considering we were out all day in the heat, I didn't think much of it. I was 32 years old, so I chalked it up to me just being out of shape. As soon as we walked in the house, I headed straight for the giant bath tub and soaked for a while!
When I woke up on Monday morning, things were significantly worse. I didn't feel bad, but everywhere I looked I saw double. 2 TVs, 2 ceiling fans, everything was doubled. I had never had trouble with my eyes before, so I was a little confused but not really worried. I put some eye drops in and found that if I closed one eye, I could see normally. No pain, no exhaustion, just double vision. We weren't planning to leave for another 2 days, and Carter and my In-Laws were coming down later in the afternoon. So I sucked it up, not wanting to ruin the last few days of our trip. I went the next 2 days walking around with one eye closed, or covered with an eye patch. We had a good time, playing games, going out to eat, and went on a dolphin cruise. As long as I only used one eye, I could see normally. The dolphin cruise was really cool. Even the captains said that they hadn't seen that many dolphins out in one trip all season. We even saw a couple that hadn't been spotted in a really long time. The captains had them all named – which was cool that they remembered the unique markers about each one to tell them apart. Kristen got a really cool picture of one in mid jump, with its body completely out of the water.
Kristen made me an eye Dr. appointment for Wednesday, back in Richmond. We were planning on leaving that day anyway, so it wasn't a big deal. I couldn't drive, so she drove the 4 hours home. On the way, I started to get a little nervous and had a gut feeling that something wasn't right. I remember saying to Kristen, “this could be something bad.” I have always been the healthy one in the family. Other than a cold every once in a while, I am never sick - ever. I hadn't been to a Dr. in 7 or 8 years, so for this to drop out of the sky with no warning, freaked me out. I think deep down, I knew something was wrong. We didn't even stop at home - it was straight to the Eye Dr., with hopes that he could help. This is when it started to get real. The Dr. said that my eyes were fine; he couldn't find anything that could be the cause of my double vision. He then said that he was concerned that it was a neurological issue. He spent the next few minutes, which seemed like an eternity, making me an appointment with a neurologist for the next day. Glad that my eyes were ok, but freaking out that I didn't have an answer yet, we went home. I called my boss and explained what was going on, and that I would need another day off for this appointment. I was starting to stress about work. It was budget season, our busiest time of the year, and the reason why we only planned on being gone for 3 days to begin with.
The next day (Thursday), we walked in to the Neurologist's office and immediately wanted to turn around and walk out. The waiting room was filled with people with an average age of probably 75, and that's being kind. I felt absolutely ridiculous sitting in this waiting room looking like a pirate, in front of all these old people. Anyway, once in the office the Dr. went through a series of tests – touching my feet, face, and hands and asking if I could feel everything evenly on both sides. Then I had a follow his finger back and forth, close up, far away. After about the 4th time I wanted to punch him in the throat. He wasn't giving much information, and the little bit he was saying I could barely understand due to his accent. What I did understand though was that he wanted me to go, in an ambulance, to the hospital for an MRI. The kicker was that the hospital was CONNECTED to his building! It would have been an ambulance ride through the parking lot which #1, I thought was absolutely insane, and #2, I was not interested in paying for. We had already spent $100 on co-pays and I was starting to freak out about how much this was going to cost. Kristen asked if we could just call and schedule the MRI on our own, which we were cleared to do. Feeling a bit frustrated, and upset about spending more money, we left to take care of scheduling the MRI on our own. Little did I know that calling on your own doesn't do you much good with the scheduling department. The first open slot was over a week away, and my eyes were still not getting any better.
I had to go back to work, so Friday morning I woke up planning on having Kristen drive me to my office with the stupid eye patch on and decide how long I could make it. It had been 4 days, and I could feel my in-box filling up by the minute. Kristen immediately knew something had changed though when we sat down for breakfast. I couldn't really focus on anything, and my balance was off. She insisted that we go to the ER, but I was stubborn and said that I needed to go in to the office first for a few hours to check in. Reluctantly she agreed, and I spent the next few hours at the office catching up on emails, and taking care of a few things. My balance however, was off and getting worse. I couldn't walk without holding on to a wall, or side of a cubicle. One of my co-workers caught me in the hall, and by taking one look at me said “you need to go the blankety blank ER, right now.” This lady is kinda like the mamma bear of the office, so I didn't really have much choice or she would have been really mad! Knowing that I was outnumbered, I put up a new out of office message for my email and asked our IT guy to take my work email off of my phone. I had a note from the Neurologist to take me out of work for the next week, so I had to plan ahead.
Driving to the ER, I didn't know what to think. I couldn't wrap my head around what was happening, because I felt fine. I expected to feel something else, something that would give a better indication as to what the heck was wrong. We walked in the ER and went right back to a room. I guess it helps when you already have a note saying what is needed. This, is when the comedy of errors started. After talking with the Dr. and going over the whole story again, they scheduled me for an MRI. The nurse guy comes in and has me fill out a paper questionnaire about if I have any piercings, or other metal objects anywhere in my body – some pretty off the wall questions, may I add – and said that I had to have this done before the MRI. I go through this whole mile long list of questions, sign it, and off he goes to finish the process. An hour later, he comes back and says that the MRI people won't accept a paper copy, that it has to be done electronically. Annoying but understandable, right? So we go through the mile long list of questions again, as if I had a chance to run out and get my belly button pierced while I was waiting. Finally we get to the end, and the computers signature pad won't work! So he calls someone, and asks if they could bring their computer down. An hour later, this computer shows up, and the signature pad doesn't work on this one either! I can't remember how long it took, but after the 4th or 5th computer, he finally found one that let me sign the stupid form so I could have my date with the MRI tube. At this point it was around 8pm, and we were pushing 8 hours in the ER. Finally they came to get me to take me upstairs for the MRI. Not knowing what I was getting into, they stuffed me into this metal tube. I felt like I should have had a cool code name, because I was about to get shot out like a torpedo! Let me tell you, the noise inside this torture tube is beyond obnoxious. The little earplugs that they give you are a joke – kinda like giving someone a band aide after a chain saw accident. Somehow I found that by counting, yes, like 1 2 3 4 5, it made it a little more bearable. I'm an accounting numbers geek, I know, but I was desperate to tune out the crazy loud noise. I think I got up to close to 700 before they finally pulled me out. It was insane!
Back in the room, and after another hour or so, the nurse dude comes in and says that the Dr. is sending me home. Woohoo! BUT, I still didn't have an answer. Another hour goes by, and the Dr. finally comes in. The look on his face told me that I wasn't going home, and he proceeded to tell me that he was admitting me to the hospital for a few days. I said “hold on a minute, back the truck up. The nurse dude just told me I was going home. How did we get from that, to being admitted?” He apologized, and said that “he clicked the wrong button, and that the nurse must have seen it before he had a chance to correct it.” Seriously?! After this lame apology, he proceeded to rest his hand on my knee, and said “there are spots on the MRI that don't look good, I'm pretty sure you have Multiple Sclerosis, I'm sorry and good luck.” That was it, BOOM! In that instant, my life would never be the same again.
As soon as that Dr. left the room, Kristen looked at me, hugged me, and we both started crying. I had never heard of MS, and had no idea what it was. Fear immediately hit, as I was convinced that a family friend that passed away the year we got married, had MS. Thankfully, Kristen had the presence of mind to remind me that it was another auto – immune disease that Shannon had, and that even then, there were other complications from a surgery. I don't remember much, other than just sitting, crying, and trying to digest what I was just told. In the middle of all this, the nurse dude came in, and stuck an IV tube in my arm. The bag on the other end, was 1,000mg of a high powered steroid. Think about that for a minute – 1,000mgs at once, and I would have 1 bag/day for the next 4 days! That's a lot of drugs. Around midnight, they finally moved me up to a room, which would be home for the next 4 days. The room was nice, and the nurses were great, other than the 4am wake-ups each day for blood work! I swear, I've never been poked and prodded as much in my life. From the blood tests, to the finger pricks, to the IV steroid, I felt like a test subject for an acupuncturist. I was tested for every disease known to man from Lyme, to Diabetes, to HIV. Conveniently, there is no test for MS. The only way to diagnose it is to rule everything else out, and to have 3 out of 3 markers – a symptom, lesions showing on the MRI, and cloudy spinal fluid from a spinal tap. I had 2 of the 3, and the spinal tap on deck for Saturday.
So....spinal tap. Yes, it is exactly as it sounds, and even more uncomfortable than you can imagine. I've never had a kidney stone, but I would have traded places without a second thought. The Dr. wouldn't even let Kristen stay in the room, which was clue numero uno that this was not going to be fun. I had to lay on my side, and after being numbed up, let the Dr. stick a, what seemed like an 8 foot long needle, into my lower back. I felt like a NY pine tree being stuck for maple syrup. After it was over, I had to lay flat on my back for the next 6 hours so I didn't screw something up and paralyze myself. Okay moving on. It hurts just writing about it.
After two days of steroids that felt strong enough for an Elephant, I wasn't feeling any different. My vision was still jacked up, and all the poking and prodding and miss-information from all of the different people coming in and out of my room was starting to grate on my nerves. At one point, due to another typo in my chart we thought I had blood cancer. Thankfully the Oncologist was smart enough to question it, and canceled the order for whatever ridonculous test that would have needed for that. I was starting to get angry. Angry at the world, angry at God, angry at anything and everything that I could think of. Why, at 32 years old, in the prime of my life, is this happening? Kristen was starting a new teaching job in the fall, and we had big goals for the next school year. Getting out of debt, and knocking off some projects around the house - we were in a really good place, and now it was gone. Thoughts of being blind, or in a wheel chair because my legs stopped working, or permanently disabled, all flashed through my head. Learning about the different possible issues that MS can cause was terrifying. How were we going to pay for this? Will I be able to go back to work? All questions that I didn't have answers for. All I knew was that I was terrified that I had lost control, and was failing my family. We would lose everything if I couldn't work. I have always had very high expectations of myself, and taken the role of provider very seriously. With a body that is now fighting against itself, how was I going to be able to continue? Very quickly, I found myself in a very dark, very lonely place.
Thankfully, our families, church family, and friends didn't give up on me. They tolerated my sour attitude, and continued to come to the hospital to visit. All 4 of the pastors at our church came to visit, on the same day! I can't put into words how critical all of the support was. It kept my spirits up, just enough, so that when I woke up on Sunday morning, and noticed that my vision was coming back into focus, I was able to snap out of my funk. It was just enough to bring that fight back, the fight to beat this. To God be the glory, my vision improved throughout the day, and was pretty much back to normal by the end of the day.
On Sunday night Kristen got a text, and asked if a friend from church could stop by. We had a constant stream of visitors throughout the day and I was tired, but said sure, why not. This friend, turned out to be a hero. She came up, sat down, and said “I know exactly what you are going through, I was diagnosed with MS at 19.” We were shocked, as we had been friends for a year or so and had no idea. She was the first person to really explain what MS is, what to expect, and how to deal with the day to day symptoms. We talked for at least an hour before she had to head home to take her medicine. She left a glimmer of hope though, which was desperately needed. She still works a full time job, is married, and has kids, all while fighting MS. The doom and gloom that I was feeling lessened a little. For this visit, I will be forever grateful.
After another round of MRIs, this time on my spine, more blood work, and more needle pricks, I was discharged from the hospital on Tuesday, August 30th. The MRIs showed an additional lesion on my upper spine, which was most likely the cause of the pain in my shoulder, and tingling feeling in my left hand. This put the total to 4, 3 on my brain, and 1 on my spine. My vision was back though, and that was a major win in getting the “flare up” as it would be called, under control. On the way out, there were no instructions, no nothing other than to follow up with my Neurologist, and to make an appointment with a general practitioner. Off you go, good luck, and off we went to deal with the rest of life on our own.
My parents came down from Syracuse, and stayed to help out while I recovered for the rest of the week. I felt like absolute garbage for the first two days home. Remember the 5,000mgs of steroids that I had just taken? I was now on 0, and my body was screaming “what the heck did you just do to me?!” I was crashing from all of the drugs, and was in full blown de-tox mode. It was awful, plain and simple. I felt like death warmed over. You would think that the nice people at the hospital would have given me a heads up about what to expect, but nope. After a little research, we figured out that it was probably my system getting back to normal, but wow, what a ride. It took until the weekend before I started feeling like a normal human again. Helpful hint – don't do drugs!
On Monday it was back to work. A quick, 3 day vacation had turned into 2 weeks off. I was so glad to be back, but I was terrified to open my email. I'll back up a little, and say that the people at my office were so supportive during this whole thing. I talked with my boss from my hospital bed, just to go over any weird things going on with my properties. He said “just get well, we've got everything covered.” Our Director, my boss, and our Office Manager called me on speaker phone to check on me once I got home. We even had a mystery box of from Omaha Steaks show up, which my Dad thought my Mom had ordered. It was pretty funny to see her face as she tried to remember if she had actually ordered something, or just browsed the website. After reading the card, we figured out that it was from my office. That's just what kind of company that CBRE | Richmond is, and why I love working there. Anyway, I walked in to the office on Monday morning, and it was back to normal. Most people had no idea that I was even out, or if they did notice, just thought I was on vacation. Only a few people knew the real reason, and I planned to keep it that way. Oh, email, yeah there were over 150 emails waiting for me! With everything that had just happened, it was nice to have something to take my mind off of it, and feel back in my element. My job is to provide the best life that I can for my family, and working is how I do that. Being able to go back to work was a huge step. My co-workers needed me, my property owners needed me, and most importantly, my family needed me. Mentally, I was starting to come around. I was pretty tired by the end of the day, but managed to make it to 5 o'clock.
In the following weeks, we learned more and more about MS, had follow up Dr. appointments, which only confirmed what we already knew, and figured out how we were going to attack this disease. Basically, MS is an Auto-Immune disease that can affect your brain, spinal cord, and the optic nerves around your eyes. It can cause problems with vision, balance, muscle control, severe fatigue, and other basic body functions. Nerves in our bodies are covered in a fatty tissue called myelin. With MS, lesions develop on nerves, which are basically spots where the myelin has deteriorated and leaves the raw nerve exposed. Think of an electrical wire that has been chewed on by a mouse. When nerve impulses traveling to and from the brain, hit a damaged spot on the nerve, it interrupts the signal, and thus the range of symptoms. It all depends on what nerves are affected. The cause is unknown, and there is no cure. Symptoms are different for each person. Mine seem so be more on the left side of my body. My left arm and hand tingle, and I get shooting sensations in my left foot sometimes. My balance is off, some days worse than others, but definitely off. Severe fatigue comes and goes, but my biggest issues seem to be cognitive. My short term memory is terrible, my heads gets foggy, and have a hard time concentrating. The sound of someone chewing can drive me crazy, and I can be fairly moody – most times for seemingly no reason.
Managing the disease is what it comes down to, and if done properly, people can live pretty close to normal lives. This knowledge made things a little less scary. I had to take better care of myself. It has been proven that people who take care of themselves, and live a healthy lifestyle, have much better success in fighting MS. So that was our answer. Kristen did a bunch of research, and figured out how we could change our diets to be healthier. Her suggestion was gluten free, dairy free, and nothing processed. Fresh meats, fruits and vegetables only. No bread, no milk, no cheese, no soda, no junk food! Our last name is Colicci! As Italians, pasta and cheese is in my blood, it's part of my DNA. I really struggled with this, but eventually came around. Along with starting to go to the gym with a friend, we started this crazy hard diet. The cheese part is really hard, and we cheat a lot with that one, but are pretty much a 100% gluten free family. So diet, exercise, and a pill twice a day has so far been a good formula for managing my symptoms. If it were only that easy. The medication that I take has a whole host of side effects. The most common being a rash on my arms, hands and neck that looks and feels like a 2nd or 3rd degree sunburn. Some days it shows up, some days it doesn't. When it does, I'll feel terrible for about an hour or so and then it disappears. The worst is a “very rare” instance of a brain infection that will kill you. So there's that...
Life has not been all roses and butterflies though. Yes, we have had pretty good success so far in managing this disease, but the day to day symptoms don't go away. I haven't had another flare up, but every day is still a battle. My medicine, called Tecfidera, only helps keep the relapses at bay, it does nothing for the day to day stuff. I wake up every morning, and the first thing that crosses my mind is to focus on the ceiling fan to make sure that I can only see one. Forcing myself to get out of bed, due to fatigue, is an every day occurrence. Feeling like I have concrete in my legs from the knees down happens a lot too. Remember the exhaustion you felt as a new parent? That's me, but without the newborn. Sickness is magnified as well. I woke up in the middle of the night with a stomach bug, and was so dizzy that I almost puked in a circle because I got up too fast and was so dizzy that I could hardly stand up. I barely made it to the bathroom. I am very aware that a relapse can come at any moment, and I live with that fear. The next time might not be fixed by that sky high dose of steroids. The next time may be more than just vision. It could be my hand, arm, foot, or just flat out pain. There is a distinct possibility that I will need a walker or wheelchair at some point before most people do. If my eyes act up again, it could be permanent blindness. The possibilities are seemingly endless, with the bad outweighing the good. It is instances like these, where I can't stand up, or can't get off the couch to play with Carter, or can't do some stupidly simple task, that I fall back into that depressed state of 'why me'.
Why – this small 3 letter word, is now my least favorite word in the English language. It is a simple word, that is used to ask a question. Usually used by children, answers to the question why, although maddening to keep answering, are usually pretty simple. For adults, the question of why is much more complicated. Why did this person get laid off, why did this person pass away so young, why did this terrible situation happen? Why, at 32 years old, did this life changing, in-curable, debilitating, terrible disease, happen to me!? We struggle with this question every day, and the bottom line is that there is no answer. Only God can answer – and with our finite, human minds, the answers are beyond our comprehension. Now I can’t tell you when my attitude changed. I guess it was gradual, as I started to adjust to this new “normal.” What I can say, is that the family and friends supporting me, and praying for me, showed me that I wasn’t alone in this fight. I was trying to do it alone, because I’m a guy, I’m the head of our house, I’m the protector, and I had to fix this. The thing was, I couldn’t – not on my own, and not under my own power. I had to figure out how to humble myself, and allow others in to help. I had to stop asking why, and accept the fact that this was reality, and there was nothing I could do about it. Acceptance took time, and was really hard, but Kristen was with me every step of the way. If it wasn’t for her, I truly believe that I would have given up. As I mentioned earlier, we were celebrating 10 years being married, but our history goes back 10 years longer than that.
It was 1996, and our families attended the same church. It was my first year in youth group, as a rising 7th grader. I saw her from across the church parking lot, and I don’t need to fill in a lot of details here, but I knew that I had to meet this girl. A few weeks later, at a youth group pool party, I had the genius idea that I would swim under the float that she was on and flip her over. We hadn’t really been introduced yet, so it was a sure-fire way to get noticed – or killed. Thankfully she didn’t kill me, and we somehow became friends over the course of that summer. I knew that I didn’t have a chance, with her being 16, and me being 12, so I was happy to just be friends. We became even better friends over the next few years. At one point, I gave her a ring that I had just gotten back after a break up. I told her that I was giving it to her because I knew that I would never have to ask for it back. We both went off to college, and had our own lives. We didn’t talk as much during those years, but there was one day when I could tell that she needed to talk. I called her at school, and just listened as she vented about a guy. This brought back all of those feelings from when I was a kid, and realized that I still liked her. Fast forward to Thanksgiving of 2003. We met up after dinner, on Thanksgiving Day, just to catch up. Silly us, decided to go to the mall on a national holiday. Everything was closed, of course, so we just sat in the car and talked. Neither of us were dating anyone at the time, and at some point in the conversation, she told me that she had feelings for me. She had known ever since that phone call in her college dorm room, but just didn’t know how to tell me. Well I about hit the roof of the car! The end of the semester couldn’t pass quickly enough, but as soon as I was home for Christmas break, we were together constantly, and started dating just after Christmas. We knew pretty much right away that we were it, and were engaged in March of 2004. I’ll let Kristen write another story about our engagement. I proposed in the same spot where I had given her that friendship ring from years prior. We both finished school – Kristen with her Masters, and my Bachelors. We graduated, got married, and moved from NY to VA in the summer of 2006, and have been together ever since – living the dream – until this happened.
We have been through other trials – marriage is not all love songs and fairies like on the Hallmark Chanel. I was laid off from my job in October 2010, the year after Carter was born. That was an extremely challenging time, which resulted in us uprooting from the Eastern shore, leaving our friends, and moving to Richmond. The financial toll was significant, but with major support from our parents, we managed to get through it. Kristen picked up extra work, and at one point had 4 jobs to help pay the bills. It was difficult, but we were healthy, and we found ways to get by. This time though, this time was different. I found another job after 3 months when I was laid off, so it was temporary. This time, this time is forever. There was no ‘quick fix’ for this, and it rocked us to the core. You say those words in your marriage vows, “for better or for worse.” You say them, but never really think about what they really mean. This is our “for worse.”
As tough as this was, and still is, every day we are a team. We will not let anything, no matter how big, beat us. This time though, we aren’t doing it on our own. This is a test of our faith, and is God showing both of us that he is in control. I know for me, this has been a major wake up call. A 100mph fastball up around the head to get my attention. I quickly got the point, and was humbled by the grace, and mercy that I was being shown. I didn’t do anything to earn my vision back. I didn’t do anything to earn a milder version of MS, that is letting me live my life pretty close to what it was prior. What I deserve is to be blind and in a wheel chair.
Back comes the question of why. This time though, my question is why am I not in a wheel chair? Why do I have my vision back? Why are my symptoms so mild, when other people struggle so much more? The answer is still the same. Only God knows why, and my little brain cannot understand. We as people, are not meant to understand. My only choice is to trust. Trust that God's plan, and reasons for this whole mess, is a perfect plan, and that the result will glorify Him. 'Why' may be the hardest question to understand, but 'trust' is the hardest thing to do. It is hard to not live life terrified about the next relapse. To have no control of my health, no matter how healthy I eat, or how faithful I am in taking my medicine. I have to trust that this is all happening for a reason.
The song by Lauren Daigle comes to mind, which is now my anthem in life. Look it up online, it's a beautiful song. Here is the chorus...
“When you don’t move the mountains I’m needing you to move,
When you don’t part the waters that I wish I could walk through,
When you don’t give the answers as I cry out to you,
I will trust, I will trust, I will trust in you.”
I am staring up at a Mt. Everest of a problem, one that dropped out of the sky and landed square on my chest. I can’t climb it alone, or even with the massive support system that we have. I have to trust that God will show me a path around it, or will set a stick of dynamite and blow a hole through middle! Either way, whatever happens, I pray that my struggle will help someone else with theirs. That my life will be an inspiration to someone else that is going through a seemingly impossible situation. If it isn’t, if I don’t live out the plan that is set out for me, then what’s the point? If by me going through this battle helps someone with theirs, then so be it. If by me having MS and having to fight for my life every single day, has a positive impact on someone else's life, then so be it, and to God be the glory.
I have MS, an auto-immune disease that has no cure. It is well, it is well with my soul.
Thanks for reading.