My MS Stages
They say the five stages of grief are:
This list is one that I experienced many times growing up. When I was in fourth grade, my childhood friend’s little sister died of Leukemia. In tenth grade, another close childhood friend’s older brother died in a car accident, and as a senior in high school, I lost a very close friend to a drunk driving accident. My sophomore year of college, I lost my aunt (she wasn’t just my aunt but such a special person – she was a wonderful friend to me and someone I hope to become like one day) to a very heroic battle against cancer (and of those I lost, those four mentioned are only those to whom I was closest). It is so strange how many people associated with my group of friends passed away during our time in high school. Grief was a familiar presence in my life, to say the least. I went through these stages seemingly countless times, but I was never fully able to grasp each step and what was happening while I was going through it; I was just going through the motions.
Now, looking back at the last two and a half years since I was diagnosed, I have gone through very similar stages. The one that stands out most in my mind is denial. I was only 23 when I was diagnosed, and I had just moved to Richmond with my friend Emily. I was supposed to wear an eye patch at all times to correct my double vision, which I did the majority of the time. I would wear it while driving to my new job, but hide it in my purse during work, and then put it back on to drive home. I would wear it around the apartment, but would leave it at home when I went out to bars or to parties.
I’ve always been a social butterfly. I love hanging out with my friends and having a good time. Let’s just say my group of girlfriends in high school got the name “Party Girls,” PG’s for short (that’s super embarrassing to write now, but I’m trying to get my point across here, so no judging.) When I initially was diagnosed, I was trying to begin my new life in Richmond, but in the bottom of my heart, I just wanted to be home in Fredericksburg where I felt most comfortable. For a few months, prior to my decision to move back home, I split my time between Richmond and Fredericksburg. I would try to balance hanging out with Emily and our Richmond friends, working at my new job at the radio station, and driving to Fredericksburg to spend time with other friends as well. I was drinking almost every night. My friends and I would hang out and play games and inevitably it seemed, end up drunk. Looking back at this time now, I think I was doing it for several reasons.
- I didn’t want to be alone. I wanted to be with friends at all times; if I was alone, reality always started to sink in, and I didn’t want to have to face it.
- If I was drinking and having fun, then I never had to face, or even process what was happening with my health and my body.
- Nobody would think I was sick or treat me differently if I partied with them every night.
It’s funny talking to my two best guy friends, Glenn and Nick, about this time in our lives now, because they recognize that they were doing the same thing too. They didn’t want to face that this was all happening to me either. If we were all drinking and having fun, then nothing was wrong and everything was the same (that was our thought process.) They also didn’t want me to be alone, so we just hung out constantly.
I think I went through anger while going through denial. The rare days that I didn’t drink with my friends, I would find myself being very mad and asking “why me.” It just didn’t make sense to me – all my other friends did all the same things I did, but I am the one who was given this burden; I am the one who got diagnosed with this disease. I was trying to start my adult life, the years that are supposed to be the best in your life, and this halting disease had to mess everything up – I had such a difficult time understanding why – I still do. I’m not an angry person, which is why I think I went into denial for such an extended period of time.
Bargaining is definitely something I went through as well. I would read things online like processed food or gluten may have direct links to developing MS, so I would sit in my room and think about if I had just been a little healthier, maybe this wouldn’t have happened. I partied a lot in high school and college (remember, PARTY GIRLS, yikes,) so I couldn’t help but think, maybe if I didn’t drink as much, this would never have developed. I also turned Paleo for a few months (minus the alcohol.) I thought maybe if I ate super healthy now, it would all go away, or at least not develop any further. The Paleo diet was way too hard for me (kudos to those who can live this lifestyle) but after doing it for a few months, I fell off the bandwagon. For those who don’t know what Paleo is, it’s a diet that is supposed to help lower inflammation, heart disease, blood pressure, etc. It’s a pretty complex diet, but in brief, it is: no grains, dairy, legumes, refined sugar, potatoes. You are allowed to eat eggs, wild caught seafood, grass fed meats, fruits, vegetables, and nuts.
I’m not sure how my year(s) of binge partying/denial exactly ended. My friends and I all got new jobs, so we had earlier work hours, so I think we just had to stop in order to accommodate. This is when I went through the depression stage. I wasn’t with my friends all of the time anymore, so I actually had to face this head-on. These are the days that I would call my college roommate, Lauck, and just cry to her. I remember feeling so lost, and just had no idea what was going to happen to me. I was scared that my MS was going to completely run my life; I was scared I would never be able to move back out of my parents’ house; and I was scared that no guy would ever want to be in a relationship with someone who carried such a burden. I felt fine health-wise most of the time, but anytime I looked up MS on the internet, I got scared to death because of how terribly it affects so many people. I was haunted by what might happen in the future. I was haunted by the uncertainty of everything.
Acceptance is something relatively new to me. I think I accepted it about a year ago, and that’s when I decided that I wasn’t going to let MS define me. I did some serious self-reflection and realized that the person I was for the past year and a half was not the person I wanted to be. I started looking at all of the good things about my diagnosis. The most pertinent one probably being that my father is a neurologist and my biggest fan. He comes home all the time with paperwork on cutting edge MS research and is always there to answer all of my questions. I also don’t have to deal with MS symptoms on a daily basis, unlike so many others fighting this disease. I can live a pretty “normal” life, and I am so grateful for that.
A huge leap for me was creating my blog, Define Normal, because it meant sharing all of my feelings with potentially anyone who wanted to take the time to read it. I’m pretty bad at explaining my feelings when it comes to talking, so writing has always been my favorite outlet of expression. I had never let anyone read my thoughts until I launched my blog last fall.
On May 1, my family, friends, and I participated in our third Walk MS Fredericksburg. This year, however, I was asked to go up on stage and say the Wish Ceremony Speech, along with a little bit about my MS journey. When the Development Director of the National MS Society for our region asked me to do this, I was hesitant at first. I don’t like drawing attention to myself for starters AND I hate public speaking. Then, I considered it for a few minutes. My goal of writing these blogs is to hopefully reach others who feel the same way as I do. What help would I be doing, and who would I be inspiring if I were to stand in the shadows? I want to help people. If I want to fully accept and embrace MS, what better way to do it, than getting over my fear of public speaking and telling others a little bit about my journey, at an event where everyone is walking for a cure for the disease I have! So, I got up on stage, said the Wish Ceremony and gave everyone at Walk MS Fredericksburg a little glimpse into my roller coaster over the past two and a half years. My friends may have told me I was shaking like a leaf while up on that stage, but I still did it.
As those with MS are aware, everyone’s experience is different, and everyone’s “stages” are probably quite different too. I just hope you know that if you’re currently going through something like this, it’s totally normal. It’s okay to be mad and confused and not want to face it; just know that you are not alone. I still have days, and I’m sure I will have many in the future, where I’m emotional about this whole journey. Don’t let those days keep you down. Don’t be afraid to lean on your friends and family during these times; I’m not sure what I would do without mine.
The holiday season is among us and can be so stressful! Do you experience more flares during this season?