Don’t Be Afraid to Share Your Story
Three years ago today, on March 15, 2016, I was diagnosed with Multiple Sclerosis. Every year on this day I take time to reflect on where my life has gone, what I have accomplished, how my disease is progressing, and what I am hoping for my future. I feel like most people usually do this on their birthdays or maybe just on New Year’s Eve (the typical measures of the start of a new year), but for me, my life was divided into two distinct chapters – before MS and after MS. So the day that I was diagnosed has become a measure of survival to me in a way. I celebrate this day because I am proud of myself for still being here, still fighting against MS, and helping to fight for others whose voices are perhaps not as loud as mine.
In anticipation of writing this post, I sat down this morning and reread my previous two diagnosiversary posts. (This is probably my favorite part of writing; being able to go back and REALLY see how I felt on a particular day. Sometimes your memory of things gets blurred over time, especially when you have lesions on the brain!) It’s amazing to think about all the ways my life has changed in the past three years and I could write a novel on all the things that happened (it’s on the bucket list actually) but as I reread both of those posts the thing that stuck out to me the most was the hopefullness that I have been able to carry with me throughout these past three years. When it felt like NOTHING in my life was going according to plan, I fought hardest to remain hopeful that my future would be happy and successful. THAT is what got me through to today.
But trust me, that was NOT something that came easy to me, or something that stayed steadily with me every single day over the past three years. While I know that the hope has always been a part of me, some days it was visible right there in front of my face and other days it was buried so deep down it took multiple amazing friends to help me dig it out. That’s why a support network is so key with MS, or any chronic disease really; you need people who are there to help, to fight for you when you don’t have the energy to fight for yourself – because MS ran off with your energy several days ago and is nowhere to be found!
People don’t like to talk about those days. I don’t blame them; neither do I. In fact, I typically don’t. On my bad days, I stay home; partly because it’s the right thing for my body, but also because I don’t want the world to see me on my bad days. I want the world to see me as a Warrior! I want them to see (and remember) the mountain climbing, cross country driving, new business starting, MS advocate, strong, healthy, MS can’t stop me now version of me!
That version of me is great, and I like her ALOT, and she’s fierce, and I’ve worked VERY hard to keep her around following my diagnosis, so it makes sense that I would like to show her off. But sometimes when that version of myself is all I’m putting out to the world, I wonder if I am doing other MS Warriors a disservice; am I feeding into the stereotypes behind “invisible illnesses” in hiding my bad days from the world? Especially in these post HSCT days, when it brings me so much joy to tell everyone how great I feel; am I being dishonest by leaving out the painful or not so smiley parts?
Putting yourself out there is hard, but the rewards that can be gained from it are life changing. That sentence pretty much sums up my third year with MS. Not only did I take a big risk in undergoing HSCT but I took a huge risk in putting my story out there and shouting my experience from the rooftops, in hopes that someone else out there, someone who was like me and searching desperately for a better treatment option, would hear about HSCT and have their life changed for the better too! I knew I wanted to pay it forward as a way of thanking those patients who went before me and educated me on the process. I would have been LOST without my stem family!
Knowing that I could use my story to help others gave me the courage to put myself out there. As I prepared for my HSCT journey to begin, I was eager to tell everyone and anyone willing to listen about this life changing treatment. And I hadn’t even gone through it yet! I felt compelled to tell my story because nobody knew about HSCT. Ok, well maybe 90% of people at least didn’t know was an option; and those that knew about it believed myths about it that were scary and untrue.
The majority of the questions I received came from my fellow Warriors via the support group I help run on Facebook. The curiosity, intrigue, and support these people offered me was unparalleled. And in return, I gave them the no holds barred, patient eye view of what it was like to receive HSCT. The support I have received over the years from this group gave me the confidence to share EVERYTHING with them. Especially because they are fellow Warriors, they “get it” because they have it too! There is a level of comfortable among us that you just can’t get from those without a chronic illness. At the time, I had no idea how many people would watch those videos and choose to pursue HSCT; but I figured if I could educate just one person, then the treatment would be a success; even if it failed in giving me my health back. Sharing my story made it worth it, no matter what the physical outcome turned out to be.
I am often asked, “what was the best thing you gained from having HSCT?” Most people, I think, are expecting me to tell them something physical. For example, that my eye sight is now back to 20/20 or that I can walk LOTS of miles in a row without getting tired. Those are both FANTASTIC improvements and things I couldn’t have said three years ago. But the VERY best part, is by far, the relationships that I have made with the people I’ve connected with through this program; my “stem family.” These people are some of the most incredible, inspiring people I’ve ever met and I gain my strength from them more every day.
There are the handfuls of people that I’ve had phone call with about the application and treatment process, and video conferences with their spouses to try and help put their minds at ease. There is the amazing Warrior who I accompanied to her evaluation, hugged her as Dr. Burt excepted her into the program, and helped her fight her insurance company to overturn her initial denial. There was the brave Warrior I met in the waiting room that very same day, and visited on the day of my one year appointment with Dr. Burt, who gave me chills as I saw myself in her position just one year ago. There was the incredibly humble guy who I helped write his appeal letter after a review board denied his request for transplant…twice; he’ll be receiving HSCT this spring. There’s the team of other HSCT veterans who are joining together in hopes of educating society about HSCT and spreading awareness worldwide. The list goes on and on…
I never would have met any of these people had I not opened my mouth about my treatment. I never would have found out about HSCT if I had not been willing to go public with my MS journey. It is amazing the things that can happen when you are willing to share your story; all of it; the good, the bad, and everything in between.
Putting yourself out there is hard, but the rewards that can be gained from it are life changing.
It took me awhile to become comfortable enough to share ANY part of my story, let alone the most vulnerable parts of it! While I am now comfortable sharing my Warrior story with the world at large, I am still hesitant to admit to the normies when I’m having a bad MS day. I have made incredible progress in being open and vulnerable with my fellow Warriors, but still struggle to show them my weak moments because I always want to be “strong and inspirational.”
So in recent months, when life got tough, instead of reaching out to my support system, I instead have found my retreating; hiding from sharing my post HSCT bad days and feeling guilty on days I was feeling less than Warrior like. And it was right about the time that these thoughts were really starting to overcome my brain, when in walked Selma Blair down the red carpet at the Oscars, cane in hand, a bit wobbly, and when overcome by emotion…straight up bursting into tears saying “You have no idea how hard it was for me to come here!” Right then, in that red carpet photo op, I was convinced that she was the strongest woman I had ever seen. Rocking her cane down the red carpet like it was her own Warrior badge of courage!
Then I watched Selma’s interview as she spoke to Robin Roberts on Good Morning America, her voice so affected by the MS flare she was experiencing at the time, at times it appeared visibly difficult for her to get her words out. She stuttered, she stumbled, but she smiled the entire interview. She struggled and I cried as I watched her speak. I cried not because I was sad or felt bad for her, hell no; I cried because I was so frickin proud of her. I think I may have even yelled at my TV, “YOU GO SELMA!!!” through some pretty ugly tears. She was doing what so many of us Warriors struggle to do; she was sharing her bad days. She was wearing her MS on her sleeve with no shame, in the hopes that it would educated the national media. Watching her have to put forth so much effort to tell her story, I realized that I was doing myself and every other person with MS an absolute disservice by keeping my mouth shut. By hiding my bald head under a wig. By staying home on days that my walking is slow. By not admitting when I’ve overdone it and need a rest. By smiling when I feel like I’m crumbling inside. By telling people I feel great when I’m struggling to keep myself together. By hiding my MS on days that I’m fortunate enough for it to remain invisible.
Putting yourself out there is hard, but the rewards that can be gained from it are life changing.
While I know that I have come SO FAR in my journey with multiple sclerosis these past three years, I know that I still have a lifetime to go. While I am truly blessed to be able to say that my disease progression is in remission, I still have symptoms that remain from the old damage done before I received HSCT. I still have bad days when I’m not climbing mountains and running around the park with my niece and nephew. I still struggle with the “what if” thoughts of my future, and fear that my disease will come back fiercer than ever one day. But I now realize that having days like this, or even weeks like this, does not make me any less of a Warrior. In fact, I am not positive that admitting your faults and your bad days is oftentimes the very hardest part of being a chronic illness Warrior. But we all have them; and in the words of a kick ass fellow Warrior, “You can’t do it all. It’s fine to feel really crappy!” Thank you Selma Blair for reminding us all that our bad days made us STRONGER.
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