What A Year

Today is Thursday, October 5, 2023 and it’s truly a bitter-sweet day for me. One year ago today is when my life turned upside down after I developed a sore throat. Yes, it all started with just a little itch in my throat that Wednesday evening…Little did I know what was going to come my way. Most of you know my story so I don’t need to go into the details of what ensued…But let’s just say SO MUCH has happened, it’s crazy. Some days I still can’t believe everything that’s happened to me…I used to hear about shocking stories of young people getting sick or suffering from an ailment that hit them out of nowhere but I never, ever thought I’d be that person. Life is really surprising and no one knows what’s waiting around the corner for them.

This past year has been a rollercoaster for me…an emotional, physical, mental, physiological rollercoaster. I had some pretty low periods where I didn’t think things could get worse…Then they did! I endured a lot, and there were (and still are) moments where I feel like I can’t handle anymore of it. I’m constantly reminding myself to be kind to myself, to take it easy and not have unrealistic expectations of what my recovery should look like. But that’s easier said than done…Especially for a person like me. The past four decades of my life have been pretty incredible and have shaped me into the person I was a year ago….A devoted wife, mother, daughter, sibling, friend and professional, disciplined, hard-working, go getter, physically strong and active, a nature-loving traveler who was always optimistic and high on life. These were some of the characteristics that shaped me as the Lulu everyone knew. A year later, after everything that I have gone through, that same Lulu is no longer there. I’ve definitely felt like I’ve lost my identity…I’m still navigating this new body, and mind, to figure out who I am today. Life is all about evolving and growing and I believe this incident in my life has forced me into this change that I find myself experiencing…This change that’s slowly helping me discover my true authentic self.

Although my life changed overnight a year ago, it’s fair to say that my recovery and healing only began after my diagnosis in May. Still, I’m always overwhelmed when I look back at my experiences from the very beginning: the numerous different types of doctors I saw initially to help me figure out what was wrong with me, conversations with family and friends about what was happening to me, moments spent alone contemplating my situation, the insane month I spent at the hospital recovering from what could be the lowest point, physically and mentally, in my life, the bombardment of blood tests, doctor’s appointments, screening tests, follow-ups, physical and occupational therapy sessions I had to go through post hospital stay. It has been a lot. All this while in an unfamiliar body and mind, just trying to slowly put back the pieces of my life and return to some sort of normalcy.

At 40-years old I never expected to be stuck in a body like this one. Yes, I’m absolutely grateful for how far I’ve come physically but still, this is not the body I’ve been used to my whole life. Many would stop here and say, ‘Maybe this is the new version of what your body should be Lulu’ and to some extent I may agree…But still, it’s very, very, very hard to face this new reality. There are days I find myself scrolling through old pictures and videos and I can clearly see how this disease has changed me. I looked so alive, and happy, and strong…Now I constantly feel broken, and weak and defeated. Some people might even say I’m boring. I’m still navigating this new me, this person I’m not too familiar with…I’m quieter, less energetic, more cautious. I’m not the planner I once was…I’m more of a ‘Let’s see where today takes me’ kind of person and more often than not the day takes me to the couch. I worry that I’m letting my kids down, and that my husband doesn’t see the person he’s known all those years. I worry that I’m not the same mother and wife to them that I’ve always been. I don’t want this disease to define me and take over my life, but sometimes I can’t help feeling vulnerable and I find that I’m not the strongest version of myself. We all have our weak moments…I’m currently living mine.

On a daily basis I find myself fighting this internal battle to not let this disease take over my life and define me. I’m sure anyone who’s been diagnosed with an incurable chronic disease will tell you that their life has changed considerably. It’s something they were never prepared for and most likely didn’t see coming. So one of the many things I’ve learned from the past year is to accept whatever comes my way, especially when I least expect it. I’ve become so much better at adapting. It sounds easy, but trust me, it’s not. I truly believe that God has a plan for everyone and you’ll only be dealt as much as you can handle. Even during those hardest moments where I really didn’t think I could handle anymore, I was somehow able to get past that hurdle and move forward to take on another day.

I’m so grateful to all my family and friends for their constant encouragement, patience and acceptance throughout this past year. Without them I don’t think I’d be where I am today. They supported me during my highest highs and my lowest lows. Each and every one of them has helped me in one way or another throughout this journey and I’m so thankful to have them all in my life. I’m especially thankful for my husband, Ali. He has been my biggest champion, super understanding and incredibly patient. He has endured just as much as I have this past year and has had such a heavy weight to carry. Not a day goes by that I don’t stop and say الحمد لله الحمد لله الحمد لله that he’s my partner in all of this.

A year has ended since it all started but my journey continues on. I will continue to learn, to grow, to adapt, to accept, to fight and to survive. I have come so far and I’m super grateful for where I’ve reached. The road ahead will be unpredictable but I’ve come to realize that the only certain thing in life is uncertainty…So bring it on dermatomyositis, there’s nothing this warrior can’t handle!

بسم الله الرحمن الرحيم

⁦”قل لن يصيبنا إلا ما كتب الله لنا هو مولانا وعلى الله فليتوكل المؤمنون”

⁦”وإن يَمّسَسْكَ اللهُ بِضُرٍّ فلا كاشفَ لهُ إلاَّ هو وإن يُردك بخيرٍ فلا رادّ لفضله يُصيبُ به من يشاء من عبادهِ وهو الغفور الرحيم”

⁦”وما من دآبةٍ في الأرض إلاّ على اللّه رزقها ويعلم مُستقرها ومستودعها كُلٌ في كتابٍ مبينٍ”

“إني توكلت على اللّهِ ربي وربكم ما من دآبةٍ إلا هو ءاخذُ بناصيتها إن ربي على صراط مستقيم”

⁦”ما يفتح اللّهُ للنّاس من رحمة فلا مُمسكَ لها وما يمسك فلا مُرسلَ لهُ من بعدهِ وهو العزيز الحكيم”

⁦”وكأين من دآبةٍ لا تحمل رزقها اللّه يرزقها وإياكم وهو السميع العليم”

⁦”ولئِن سألتُهم من خلق السماوات والأرض ليقولنّ اللّهُ قُل أفرءيتم ما تدعون من دون الله إن أرادني اللّهُ بِضُرٍ هل هن كاشِفاتُ ضُرِّهِ أو أرادني برحمةٍ هل هُنَّ مُمسِكاتُ رحمتهِ قل حسبي اللّه عليه يتوكل المتوكِلونَ”..