By Sawsen Jamaleddin
The aroma of ginger and garlic swirls in and out of my nostrils, tap dancing inside a wok of hot oil, overpowering the sterility of bleach that has inhabited our house for the past year. The two women in our small kitchen are dressed in matching blue uniforms. They are stirring and whispering as the flame of the oven rises and relaxes against the hum of the microwave vent. The one with brown curly hair notices me and smiles. The other is so tall that I question the ceiling. But I have stopped questioning their presence. Hunger is stronger than my curiosity. Fear is better than knowing.
The tall one moves the wok back and forth with a grace that reminds me of a swaying palm tree. “How was school?” she asks, sprinkling small conversation between us, her eyes as warm as the heat fogging up the windows. I have no words to respond. At ten years old, my tongue refuses to work with my mind. Years of a lisp and speech therapy and I still can’t form the question that is on my mind. What is wrong with my father? I know she knows what I don’t.
She was there the day I opened my parent’s always-closed bedroom door and ran inside with a set of BIC pens that I bought for my father’s upcoming 43rd birthday. When I neared his bed, I did not recognize the skeletal body in front of me. Brown eyes that resembled mine opened, disoriented, turning into droplets of despair when he blinked at me. His dark skin looked faded in the light of sun, the cascading rays revealing an IV that protruded from his arm. He resembled a prisoner of war, starved, resigned. All I wanted to do was bandage the pain, cover his bones with my skin, drape my eyes from seeing, from imprinting the image of my father in front of me.
“Who is she?” he asked staring at me. Shock stood numbly between us. The set of pens fell from my hands, unwilling to write the tragic chapter unfolding.
It was then that I noticed movement in the corner, the tall woman making her presence known, as she stood up from the opposite side of the room and rushed to pick up the set of BIC pens off the floor. She put the jumbled pens in my palm and ushered me out of the room.
Weeks later, my father lost the war of life.
The kettle sputters and seethes. I turn the stove off and pour the water into a floral cup that has survived my move into wifehood. I open the white canister to get a tea bag when I suddenly feel a rush of liquid run down my legs. The vinyl tile in the small kitchen has become a pool of amniotic fluid. At twenty-two years old, I am going into labor for the first time. It seems that my unborn daughter is as patient as boiling water.
“Ahmad,” I call out to my husband of less than a year, “it’s time!” He sprints out of the room, then stands frozen by the murky water in front of him, a look of excitement and fear crisscross across his face. The ride to the hospital took less than ten minutes, but once we got there, labor seemed endless. After more than twenty-four hours of what-the-hell-was-I-thinking screaming, along with spurts of meconium leaking from my womb, an emergency c-section was the only option to deliver my baby safely.
Once the epidural was given, everything became hazy. All I remember before the blackness is hearing the doctor’s panicked voice in the background, “She’s losing a lot of blood.” When I woke up, it took me a while to orient myself to where I was. My husband was seated in a chair facing the window. My mother was seated beside him. My newborn daughter was in a bassinet beside my bed. I tried to move my arms to pick her up, but my limbs felt like spaghetti. Pain ricocheted throughout my body. I stifled my scream when a nurse came in and handed me pain medication. Then the doctor walked in.
He congratulated us and then explained I had lost a lot of blood during surgery. “I’m wondering if you have von Willebrand disease?” he questions me. Von-what? I thought. It was the first time I had heard that word. I shook my head no.
“You lost a lot of blood. I would like you to have a blood transfusion,” he advised. My mother stood up. “No,” she shook her head adamantly, “No blood transfusion.” Why not? I wondered for a fleeting second until brain fog and pain clouded my curiosity that I said nothing. The doctor sighed, “We’ll try an iron infusion instead.” My mother nodded for the both of us.
Depending on who you ask, childbirth seemed like a small pinch compared to a wisdom tooth extraction. Once my teeth were extracted, strong painkillers were prescribed, and I devoured them like M&Ms until I became aware that the more I took, the more my mouth bled. When the pain finally eased without medication, gauze pads still had traces of blood more than a month after the procedure.
During the follow-up appointment, I asked the dentist if the ongoing mouth bleeding was normal. “Everyone is different,” he answered. Instead of demanding he investigate my concern, I walked out with more gauze. It took another month for the bleeding to stop. I have never had another tooth extraction. However, I did have three more children. Motherhood is a dizzying merry-go-round.
A year after my daughter was born, my nephew also made his entrance, granting me the title of Aunt. It was a year of new beginnings, but it was also a year of numerous hospital visits. I couldn’t understand the unexplained bruises that riddled my nephew’s small body. It reminded me of a past life, one I couldn’t quite put my finger on.
After a light fall from a bunk bed when he was five years old, an egg-shaped bump on my nephew’s kneecap formed, making it hard for him to walk. My sister took him to the hospital to get some answers. After waiting nervously for some news, my mother called to share the diagnosis. “The doctors think he has hemophilia,” she said reluctantly. Although it was the first time consciously hearing that word, it felt oddly familiar. “Your father had hemophilia,” she explained, but didn’t elaborate.
That night I googled the word: Hemophilia. Bleeding disorder. I searched for the cure. Incurable. The next day my younger brother and I drove to the hospital together to visit my nephew. “You know Dad had hemophilia, right?” He asked, not waiting for my answer. Something about the way he braced his hands across the headrest made me sit up straight and pay attention to what he was about to say. Although he was younger than me by two years, he was closer to my mother, and I knew whatever he was going to say was going to be insider information. “You know how Dad died, right?” I said nothing. This question was something I’d been wondering about since the day he took his last breath. “He got HIV from a tainted blood infusion.”
Staring out at the twirling hands of a turbine while my father drove, his hands clutching the steering wheel so tightly his olive-colored knuckles looked as faded as the clouds that traveled with us. I never asked where we were going. I was simply happy to miss a day of school, excited to bask in my father’s presence since he was always on the go, even when it seemed like his limp made it hard for him to go the distance. For as long as I remember, my father always walked that way. It was more pronounced when he was standing for a long time. He never complained and I never questioned it, thinking he was just born that way.
But there are things I wish I had questioned then, things that my young mind wondered about, like the vials of medicine in his closet that were neatly stacked beneath his coats, the times he spent a few days in the hospital and came home without an explanation. Or the nurses who used to go into my parent’s room before I went to school, and when I would return, the smell of Asian food would waft through the house – sometimes I wonder if that is where my love for Chinese food came from.
Was I trying to hold on to the time my father was alive? To the moments when I didn’t need answers because he was still alive, and that was all that mattered? Or was I too afraid to wander into the truth for why there were nurses around the clock, and instead, chose to comfort myself with the food they fed me and my siblings? Sometimes I wish I could pause and rewind the years to get the information that medical records no longer contain. I wish I could ask my father just one question: Can you tell me all about you so I can know more about me?
After more tests, my nephew was diagnosed with severe hemophilia. He needed clotting factor. It was then that I examined my lifetime of symptoms. The excessive bleeding. The unexplained bruises. The joint pain. I requested genetic testing for myself as well as testing for my factor VIII level, along with my children. My children were cleared genetically, and their factor levels came back normal. But I held the mutation gene. My factor level came back at 42. I knew then that I too needed factor. I also knew that I too had hemophilia. Not only was it factored in my blood, but in my joints, the result of years without proper diagnosis and treatment.
However, getting diagnosed as a woman with a predominantly male bleeding disorder is like trying to convince a giraffe it is of average height. Or like trying to convince your blood to clot by just shouting at it. The struggle to be heard and be taken seriously is absurd, but painfully real.
Sitting in various waiting rooms has given me a newfound appreciation for HGTV and the Food Network. It has also given me an abundance of patience that seems necessary when dealing with a bleeding disorder. The last hematologist I visited when I was thirty-six told me it was a “mystery of life” why my joints ached. She gave me the classic carrier status associated with being the daughter of a severe hemophiliac. She discarded the results of my genetic mutation, discarded my low factor VIII level, discarded my low ferritin level, and basically told me my symptoms were imaginary.
If only that were the case, then I’d will my blood to clot, I’d will my restless legs at night to stop shaking, heck, I’d will Starbucks to deliver a few shots of espressos on the spot. And I’d request a lot of ice. Because my chronic anemia demands a cold wake-up call in the morning. The truth is if I were a boy, all these symptoms would ensure a quick diagnosis. Hemophilia. And swift treatment. Factor. But my double X-chromosome warrants a shoulder shrug and the concerned-for-my-mental-health stare from various hematologists.
During the pandemic, I learned about the Hemophilia Federation of America and joined my first virtual session. It was then I realized that my story was like many women with bleeding disorders. We have been made to feel like we don’t matter. We are often overlooked and underheard. When I finally received a referral to get diagnosed, I was ecstatic. But the catch was that the clinic was hundreds of miles away from my house. I knew it was the only option for me as a woman to get diagnosed.
Once I arrived at the clinic, I felt reassured. After asking me a few rounds of questions and performing lab work, I was sent home with hope. Once the results came in, I was relieved. Mild hemophilia. It was the truth I had waited for; it was the written proof validating years of pain.
But the reality is that getting diagnosed is not enough. Treatment must be implemented. Words of reassurance that I am fine from healthcare professionals do not stop the bleeding. They do not change history. The Hemophilia Holocaust took my father. If more care isn’t taken, more lives are at risk by not getting the proper treatment.
At thirty-nine years old, my joints ache. My body hurts. You can often find me resting in bed, reading a book, or complaining how depleted of energy I am. I feel a lot of my exhaustion is due to having to fight twice as hard with medical professionals, to warrant a proper diagnosis for my bleeding disorder and to receive treatment. It should not have taken hundreds of miles and numerous hospital visits to find a doctor who acknowledges women with bleeding disorders.
It is time that a woman is taken seriously. She knows her body. If she is seeking help from a medical professional, it is not because she likes to watch paint dry while watching DIY home remodeling shows, no matter how nice the shade, or watch how to cook pasta while wearing an adult diaper, praying the blood doesn’t leak through her clothes until she can meet with a doctor, only to leave empty-handed searching for the nearest restroom to assess the damage.
It is time the past stops bleeding into the present. It is time a woman is given the red-carpet treatment in the bleeding disorders community because she bleeds just as much as a man, if not more.
ABOUT THE AUTHOR
Sawsen Jamaleddin is American by birth and Palestinian by heritage. Sawsen earned her Bachelor of Arts in educational studies from Western Governors University and is a substitute teacher. She lives with her husband and four children. She enjoys writing and traveling and is excited at finally being able to connect with women who share her history in the world of bleeding diagnosis. Sawsen was reintroduced to her family history of hemophilia when she was 29 years old. She is passionate about advocating for women in the bleeding disorders community.
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