The Life I Want to Live

In the final years of high school, I wasn’t sure I wanted to go to college. I was emotionally and physically exhausted. AP classes and the seemingly all too encompassing social stresses were trying, but paled in comparison to being diagnosed with multiple sclerosis at 15 years old. I was in a bad place then—stumbling through classes, and suffering from depression and anxiety. I applied to colleges as I thought I should, not expecting much back.

Once I entered college, I wasn’t sure I liked it. But I was aware of the immense privilege I had to be able to access higher education. During my sophomore year, I finally found my footing. I discovered what studies I wanted to pursue, and my grades have reflected my passion, as they seem to get better with each passing quarter.

I am now a junior in college, and this past year was a year of changes for my MS. I experienced new symptoms and went on a new medication. In May, I had a flare-up that manifested itself in vertigo, something I had never experienced. I woke one morning with the world spinning. I could not walk without falling, and I could not stop vomiting. It was terrifying. Walking up with numb legs or feet was pretty “normal” for me, as weird as that is to think. But to lose my ability to walk or any sense of balance scared me.

My mom came up to Bellingham from Seattle as soon as she could. I saw it in her eyes—the despair of seeing her child suffer from something she had no control over. The issues persisted for a week and a half, before I got an IV steroid.

In August of last year, I went from daily Tecfidera to the monthly infusion of Tysabri. A more serious drug for more serious symptoms. Since starting Tysabri, I have had no flares. The recent MRI reported zero new lesions. It was in that moment that I realized how much I wanted my MS to be stable. Hearing that news made me happier than I had been in a long time, nearly on the verge of tears.

Outside of MS, my life was changing as well. I got my first job last September. I worked for the university to register students to vote. I have always been passionate about civic duty and using the rights given to me. I tried to instill that same vigor into my peers. There were some who had been disenchanted from voting. But this did not keep me from trying to get people to vote.

As for getting connected to the MS community, I had made moves to get more involved. When I was diagnosed at 15, I wanted nothing more than to forget about it. That meant avoiding all aspects of the MS community. As I have gotten older, I am more interested in the experiences of other people with MS. A friend the same age as me was doing a project related to MS. She has the disease and was taking pictures of others with MS. I volunteered to be a part of her project, and it was a great experience.

This past year was a rough year for many, myself included. However, some amazing things happened, too. I travelled to New Zealand with my family, and it was phenomenal.

Even with some awful MS symptoms having happened, I wasn’t and am not going to let them keep me from the life I want to live.
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Sara

Sara O'Neill

Sara O'Neill is double majoring in sociology and history at Western Washington University in Bellingham, Washington and is a 2017 National MS Society scholarship recipient. She was diagnosed with relapsing-remitting MS at 15. At Western, her passion for social justice and interest in studying inequality has flourished. With graduation on the horizon, Sara has her sights set on graduate school to pursue a deeper understanding of sociology. 

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    9 Comments

  • SteveP   Aug 28, 2017 12:23 PM
    Sara. You are an inspiring woman. I was diagnosed with MS in my late 30's after my life was already established and it was difficult to face future life challenges with the specter of a chronic disease. I can't imagine having that burden before being out of high school. Your strength and perseverance and optimism for the future is truly admirable. Keep up the good fight. I know you will accomplish great things.
  • Laura Crooks   Aug 28, 2017 4:08 PM
    Sara, You are an inspiration to many and so brave to speak up about your illness and your associated struggles. MS is a serious disease with many side effects (from the disease and from the drugs). Your heartfelt blog about the toll on your body AND your mind speaks deeply to me. While I do not have MS, I have seen the toll of living with chronic illnesses and with how anxiety and depression can also take root when living with these diseases. To say you are quite accomplished seems obvious given your academic record, to say you are a roll model of perseverance and bravery is an understatement. Thank you for sharing!!!!
  • Frances L. O'Neill   Aug 28, 2017 7:00 PM
    Of course, grandmothers are expected to be proud of their grandchildren but pride is perhaps a bit weak for what your essay has evoked. I know first hand how difficult things were for you - and your parents - when you were first diagnosed. But I also know, well hidden behind that teen-age angst you reference, was a very real sensitivity to injustice and intolerance. So it is so gratifying to see your determination to work against those evils blossom with your new-found confidence and optimism. I'm still waiting for that magnum opus I know you will produce!! I love you and am proud of you!
  • Diane Simons   Aug 29, 2017 11:47 AM
    Thank you Sara for sharing your story and providing insight to the struggles and barriers you have faced in your personal journey. This has provided me with tremendous insight and I want to thank you again for sharing! dls
  • annette c   Sep 4, 2017 12:09 PM
    Sara - You are an amazing young lady. To cope with the diagnosis of
    of MS just before starting college really is double stress. Every day
    is a fight, determination, perseverance and a lot of pluck you have.
    I was diagnosed later in life and I truly admire your positivity. Keep
    smiling and fighting.
  • Debbie Kruse   Sep 5, 2017 6:21 PM
    Sara--so good to hear that you are doing well and enjoying wwu. Thank you for sharing your story! Keep up the great work--it matters.
  • Jay Siersma   Sep 17, 2017 6:18 PM
    One day at a time! My first attack was Halloween, 1994. I woke that morning, and I could not see out of my left eye, just fog. Except for a few minor symptoms in that time, it gave me 23 years. My point is, you never know with m.s. Now my legs don't want to work, but I am grateful for the time that I had, I was diagnosed at 31, now 53, onward and upward! Email me anytime!!L jjsiersma@gmail.com
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    Jazmin  Sep 28, 2017 10:35 AM
    Sara, thank you for sharing. I was diagnosed my 2nd year in college and that was a challenging time as majors should have been locked in. I'm glad to hear that you are doing well now and I hope that life continues to get better on Tysabri (I also have to switch due to the development of new/worsening symptoms). Your story really helped me this morning as I try to tend to a job that's causing me stress and increasing my fatigue while also thinking about the future. Thanks for sharing <3
  • Crystal Jarvis   Mar 15, 2018 11:49 AM
    REALLY!! Im continuing living too

    Each year an individual is diagnosed, at alarming numbers, with multiple sclerosis known as MS. Many often fear or even wonder what this diagnosis brings, other than how celebrities like Montel Williams describe his symptoms. When I was diagnosed I didn't know or understand what multiple sclerosis even was. I only knew it was an illness but after doing some research I later found out what it was. And how scary it can be without support: family, friends, and doctors.

    First of all, multiple sclerosis doesn't kill people it only disrupts the myelin that insulates and protects the body's nerve cells within the brain and spinal cord. This causes the body to fight against its self. It's known as an autoimmune disease. This sucks but it is what it is. This myelin is damaged at a small or large degree which spreads and scars tissue creating white patches in the brain known as a lesion or lesions. These lesions can be seen on a MRI, magnetic resonance imaging, which a neurologist prescribes for you to take. Closed and open MRI's are used to help diagnose multiple sclerosis. A closed MRI completely encloses the patient during the scanning of the spine and brain, but many claustrophobic patients decline this one. An open MRI is the one that many claustrophobic patients prefer, because they are not enclosed during the brain and spinal scanning. After a diagnosis is made the MRI helps doctors name what MS it is: primary, secondary, or relapse remitting which helps the doctor decide the proper medicine to prescribe.



    Neurologists usually prescribe medicines that help to slow the progression of the lesions. Some of those medicines come in pill form: Tecfidera and Gilenya...but many are infusions, meaning given through an IV: Ocrevus, Rebif. There is huge variety of medications that can help a person. Whichever one would suit you your neurologist will check with you first to see which you prefer.



    Before my MS diagnosis, I had a traumatic head injury in 2009, and my life feels like it's on hold. But of course I don't allow that to stop me from living my life and being independent. I’m in college with needed assistance: a note taker, use of a recorder during lectures, extra time to complete a test in a private and secluded area with surviance. I go to the movies, out to eat, shopping with family and friends. I'm not dating right now which is my choice. I'm not working but it's ok. Regardless of my restrictions, I find and have found things to do. This illness is not an illness I take ownership of and I would not wish it on anyone. I just do my best to keep living every day.



    In being diagnosed with MS, some days I'm energetic and some days I'm not. On the days I am, I try to do as much as I can. But on the days I'm not, I tend to get very frustrated being that before this diagnosis I was very independent. I still am today but it's limited nowadays. Now I can only do as much as I can then sit and take a break to allow my body and mind to relax so I don't cause a MS relapse. I'm not old aged and this pisses me off.



    In every case you will need to keep your faith in God for better days. You'll need to have the proper doctors: neurologist, psychiatrist, etc and have the rights therapists: physical therapist, counselor, whichever is needed. And please keep a smile on your face remembering that you only have MS, you are not dead. Remember to always do your research on everything, especially the medicine your neurologist prescribes or wishes for you to try. You are welcome to say no, because it's your body so it's your right.