Choose Your Language:
Posted by: The Sumaira Foundation in Blog Posts
It was the Thursday before Columbus Day Weekend. I had an early morning flight to New Jersey the next day to spend the weekend with my family. I hadn’t left Boston in a while so I was really looking forward to a change of scenery. Though eager to get out of town, I’d been experiencing increasing anxiety. I knew something wasn’t right; I was seeing black again. A part of me didn’t want to say anything out of fear I’d be sent back to the hospital. Alas, I spoke up. We ran the tests. It was back. I was relapsing. My heart was pounding with fear. I thought I’d been on the mend – WTF?
I was admitted for the 3rd time in 4 months. A 4th MRI and 2nd lumbar puncture was performed. I endured yet another 5 days of IV steroids. To add to my extensive resume, I underwent 4 days of something called “plasmapheresis”. In layman’s terms, a plasmapheresis is the filtration of one’s blood. A central line catheter was implanted on the right side of my chest for easy access to my veins. Lovenox and insulin shots were injected into my belly sometimes multiple times a day. Finally, I was discharged on October 16th with the central line catheter still intact. The next morning, I had my last plasmapheresis treatment as an outpatient followed by the explant of the catheter.
That was easily the most stressful week of my life. I didn’t even know what to make of it at the time. I was confused, sad, and frightened. Why was this happening to me? I couldn’t help but feel so much anger towards my own body for hurting itself without any rhyme or reason. I lost sleep. So many questions were running through my head – Am I going to survive? Will I ever get married and/or have children? What if I can’t dance again let alone walk?
I felt like a prisoner. I kept thinking to myself, “If this is how the rest of my life is going to be, then I don’t want to live like this.” I remember looking over at my mother, who was stressed beyond belief yet trying so hard to reassure me that everything would be okay, feeling guilty for considering euthanasia. I had hit an all-time emotional low. I lost faith in my own body and the quality of my future. I had never felt like this before.
But then, something happened…something visceral. From the moment that catheter was removed from my body, it was as if all the stars aligned. I felt a magical sense of liberation. I left every bit of negativity back at the hospital that day. There isn’t an ounce of fear, anger, or sadness left inside of me. I feel “lighter” and the happiest I’ve ever felt in my life. I’m fearless now (actually, that’s a lie – I’m still deathly afraid of mice, rats, and wild turkeys). But that moment was truly miraculous.
Since then, I’ve been on a natural high on life and I’m hoping it lasts. Sure there are going to be challenging days, but I believe that I’ll be able to weather through tough times with finesse. Despite everything, I believe now more than ever, that I am blessed. Blessings can arise from unexpected places. I’ve made a promise to myself that I’m never going to allow my illness dictate my life. I’m striving to live a happy, fruitful life to the best of my ability. And I will get married and become an amazing mother some day.
With all the cuts and bruises on my body, I look like a war veteran but I feel like a reincarnated baby. I’m not religious by any standards but I’ve thanked a higher being every night for making me feel the way I’ve been feeling. I’d rather live a short happy life than a long miserable one. I’m so grateful that happiness was the end product of that nightmarish week. Every day, I’m learning and one thing’s for sure – life can be as beautiful as you allow it to be and I won’t have it any other way. xx
PS: Someone passed this quote along to me. The relevancy is so uncanny it gives me the chills!