Looking Back on My First Year
TODAY... is a HARD day for me. In so many ways I could easily fill an entire book with each challenge this year has thrown my way,
BUT it is also a day I can look at and reflect on with a full heart even through the pain.
ONE YEAR AGO TODAY, I received a diagnosis that changed the course I thought my life was going to take. In one phone call, I had an answer to explain the many questions about what was happening to me. About a month before was when my first symptoms began: the vertigo, the blurred vision, double vision, changes in-depth perception, light sensitivity, weakness in my limbs, difficulty walking, difficulty reading, struggling to remember common names of people and places, widespread pain, extreme fatigue, and new symptoms continuing to appear and progress without explanation culminating in a significant loss of independence. I became frightened to fall asleep at night, because I didn't know what different version of myself I would wake up to the next morning. All of these questions bombarding me, no matter how much I tried to push them aside, now had a reason: your MRI shows multiple brain lesions and your symptoms are CONSISTENT WITH MS.
The longest part
The DIAGNOSIS was one of the bigger initial steps on my journey to understanding what was happening to me, but the longer part of the journey came after and continues to this day. Learning how to do things differently, understanding and respecting the limitations of my body, while constantly fighting to do everything in my power to strengthen myself to be there for the moments that matter and the people I love.
DESPITE ALL THE HARDSHIPS this year has brought for myself and those I love, it has also shined a beacon of light on the COUNTLESS BLESSINGS I am so fortunate to have in my life:
For the practitioner who took the time to call me the day before Thanksgiving to reassure me when she broke the news to me about the many strides made in the fight against this disease, who knows it well, because her brother also has it.
To my sister, who was the first person I told the news to, who held me and cried with me and told me it's going to be okay.
To my husband, who immediately started looking for a neurologist and finding the best care team for me and coming to every appointment to articulate my needs when I struggled to, and has constantly made adjustments to serve the changing needs of our family.
To my sister in law who helped find me an excellent neurologist when it seemed impossible with an initial wait time of 6 months for new patients within the context of covid, but who somehow found a way to get me one within a few short weeks.
To my parents, who lived with our family for six months to help care for us when my abilities became increasingly limited and stayed here through every tear and every triumph.
To my mother in law, for helping my husband as he faced one of the scariest days of his life and for always sending her love, prayers, and guidance to us.
To the parents at my son's school also doing e-learning alongside us who went out of their way to deliver my son's work to us when I lost the ability to drive.
To the teacher who understood what our family's needs were as we were going through this crisis and made modifications to help us until he returned in person to school.
To the stranger, who saw me through my tearful eyes and stepped up to help me when I tried to do something independently for the very first time as I struggled to check in at the bloodwork check-in kiosk that was too hard for my eyes to read for my now necessary regular bloodwork when no one else would, and helped me pick up all the things I dropped as I fumbled to find what I needed to scan while trying not to fall because of my poor balance.
To the nurse at the doctor's office who helped walk me to my car after an appointment because I learned using a wall to help visually ground you in your unfamiliar surroundings while helping to keep your balance, may sometimes result in that wall actually being a door that opens from the other side knocks you down- she understood because her daughter in law has MS too.
To the people at the DMV who helped me register for my handicap pass, for handling me with such gentleness, I can tell you knew this is a hard step to take for people getting one for the first time in accepting a life-changing diagnosis.
To the nurses at the infusion center who remember me each month or more I need to come in for an infusion, and always helpfully keep me distracted from the infusions while listening with an open heart.
To the physical therapist specializing in MS, for knowing exactly what patients like me need to hear to help give us hope.
To my pain management doctors and chiropractor who help keep me moving as much as possible by reducing some of my chronic pain and strengthen me to reduce my number of falls.
To my neuro opthalmologist, who helped improve my vision to the point where I was able to regain some independence after seven months, and who helped schedule me for my first vaccine as quickly as possible due to the risks I have now being significantly immunocompromised.
To my daughter's teacher this year, for her compassion, whom I'm so glad knew me before this because she still sees me for the teacher and person I was before and makes me feel like I'm the same person even if it's in a different form now.
To my son's teacher this year, for being the exact kind of role model of patience, kindness, and love he needs in his life right now.
To my fellow MS warriors who I've met along the way, you know my struggle and my heart because it is yours too, and your collective knowledge has helped me as I traverse this uncharted terrain.
To the friends who have listened, and given me room to cry and grieve, and cheer me on in each victory, no matter how seemingly small.
To all of the countless family and friends who have helped with providing food, assisted with cleaning, spent time with our children when I've been too sick to give it my all, and to everyone who has called or sent words of encouragement:
I thank you
YOU have helped keep me going when it's been too hard a burden to bear.
YOU made sure I would never have to face it alone.
I've kept all of your letters, and I look back at them to draw strength from when I need it most.
And to my greatest gift of all, my children, who hold me tight on days I just need a really long hug because I miss the way we did the things we used to do, and who love me through it all.
I realize many of you may not have known my struggle, because I wasn't ready to share it; and to an extent, I'm still not fully ready even now, as I'm continually working towards embracing the me I am becoming with each small step I take.
You never know what journey another person might be facing, or where the road will take you; but, you can be certain, if you are willing to look for the beauty within the hardship, there will always be blessings to be thankful for.
Thank you, to every single one of you, who has walked along this journey with me. I'm grateful beyond measure to be so immensely blessed.
How often do you use assistive devices to help manage your MS?