When I first heard my diagnosis of MDS or preleukemia, I walked around in shock and disbelief. I didn’t feel sick, except for the thumping in my head. Doctors would ask me, “Are you fatigued, dizzy, short of breath?” especially when my hemoglobin was at a critical level (5.9), and I would respond, “No.” They would look at me and say things like, “Hmmm, that is interesting,” or, “That is unusual.”
In the beginning, I felt defeated momentarily, then I would bring up my fighting spirit, deciding giving up was not an option because I had too much to live for. But fighting seemed so hard, when I needed all my energy to heal. So, I made the decision to embrace my diagnosis, lean into this new journey, be grateful for my medical team, my family’s support and the community that was sending me so much love. I was also so grateful that the sabbatical I had taken gave me time and space to discover I had this “imbalance in my body.” This may sound strange, but I decided to “love” my MDS away.
The hardest part for me was changing my attitude from “I can’t do this” or “I am sad about that” because I was missing out on things that were important to me or brought me joy. But I realized that I could not do anything about missing out on those things. What I could bring was a different perspective that would allow me to find ways to still experience events, even though it was not what I originally expected.
Case in point . . . I was sad that I could not attend Aiden’s baccalaureate, especially since he was speaking. But Mary videotaped his speech, and I now have this moment forever.
Next, the doctor told me I could not attend Aiden’s master’s graduation because my immune system would be at its lowest and large crowds were not advisable. For a moment, that made feel like I would be missing an important event. But then the doctor said that if I wanted to celebrate with the family afterwards and have dinner, he thought that would be OK.
The Aizumi family gathers to celebrate Aiden getting his second master’s degree. (Photos: Courtesy of Marsha Aizumi)
Fortunately, the graduation was livestreamed, so in the air-conditioned comfort of my home, along with snacks, soda and my comfy sofa, I had a front-row seat. That day, the temperature was 100 degrees, and the graduation was outdoors. Aiden even suggested that his younger brother and girlfriend should watch it with me, so I didn’t feel so alone. Stefen and Cat ordered decorations and came early to decorate. Then, Papa and Stefen went to get food that Aiden selected, so he and Mary came straight from the graduation to my home. It was a perfect day!
Finally, Aiden and Mary were chairing a Family Fun Day for Pride month. I had attended the three previous Family Fun Days, helping with set up and decorating, but once again, there would be many people, so I decided it was safer to stay home. Papa, Stefen and Cat attended, and this time there was no livestream . . . I was alone. However, I volunteered to watch Aiden and Mary’s dog, Kuma, so they didn’t have to worry about feeding Kuma, since it was an all-day affair.
PFLAG Pasadena and SGV API celebrating Pride
I asked Tad to take some photos and videos if he was able. He sent me a number of videos and pictures. But then, something very magical happened. People started to send me texts with videos and photos, telling me what a good job Aiden and Mary were doing and what a wonderful and fun event this was. Bantering back and forth with a number of people made me feel I was actually at the event. It was not the same as attending, and I could dwell on that, but I chose to focus on what I could do and be grateful for those moments.
I have learned that I have a choice as I walk through this new life with MDS. And choosing to find the beauty and the silver lining in every situation has made me feel empowered, rather than a victim to this disease. Focusing on love, laughter, gratitude and joy continues to be my North Star, and it has served me well. I believe what you put your attention on is what you attract more of.
I leave you with this saying that my father used to repeat to me as I was growing up. In a way, I feel that he is on this journey with me because of this Serenity Prayer. May it bring comfort and support to anyone who is facing a challenge . . .
‘God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.’
Marsha Aizumi is an advocate for the LGBTQ+ community and author of the book “Two Spirits, One Heart: A Mother, Her Transgender Son and Their Journey to Love and Acceptance.”
