Tavares Speer
When I met with Tavares over Zoom for our interview, I mentioned to him that while tuning into an I AM ALS 2024 ALS Community Summit panel session over the summer, I immediately recognized him from his posts on social media. With over 83,000 followers on his Instagram, there’s no doubt that people are paying attention to what he is doing and what he has to say. Now, it’s my turn to learn more about his ALS journey as well as his path towards ALS advocacy.
Tavares’ ALS symptoms began in 2014 with a slight twinge in his arm that he ignored for a long time. In 2017 the symptoms progressed to spasms and the inability to lift items. He was officially diagnosed with ALS in 2018.
“Prior to ALS, I was a visually outgoing and gregarious person who couldn’t sit down for more than two minutes — always planning something, doing something, and running around,” says Tavares. “When I was diagnosed with ALS, I was working as a business analyst. My neurologist gave me a choice. He said that there are some people who will work up until the point where they no longer can and then go on disability. Others choose to go on disability right away so they can enjoy the time that they have while they are still able to do most things. My husband Eric and I decided that we wanted to go the latter route because we wanted to travel and just spend time together.”
Adds Eric, “Tavares is still very gregarious and outgoing, like he always has been. He’s just doing it sitting down instead of running around everywhere.”
At the time Tavares and Eric were living in the San Francisco Bay area so they joined the local ALS clinic at Kaiser Permanente San Francisco ALS Multidisciplinary Clinic. Although Tavares had participated in the ALS Ice Bucket Challenge years before, he couldn’t have ever imagined being diagnosed with ALS himself.
Despite having been surrounded by neurological teams who wanted to study him and provide him with resources following his diagnosis, the compassion from the medical team and the instructions on what to do following his diagnosis were unclear.
“After getting this powerful and devastating diagnosis you would assume that there would be a more compassionate conversation with the medical team and better instruction on what to do next and what to expect,” says Tavares. “Most people told me that once they got their diagnosis, they were sent home, told to get their affairs in order, and then waited to die. I’ve heard this from so many people. This is one of the reasons why I started my advocacy.”
Despite his initial desire to start his ALS advocacy right away, it did take some time for Tavares to come to terms with his diagnosis before letting others know, including his closest loved ones.
“It took me awhile before I actually opened up to family and friends. I had to deal with it myself. I’m not going to lie; it was a struggle,” explains Tavares.
Although his ALS advocacy began later, he had begun following many ALS-related organizations following his diagnosis. Because of this, he was aware that May was ALS Awareness Month. Thus, feeling ready in May 2019, he decided that it was the right time to come out with his diagnosis.
“I remember having this overwhelming feeling to join and participate in promoting ALS Awareness Month,” says Tavares. “I got on Facebook and Instagram and just wrote, ‘I have ALS, but ALS does not have me.’ That was my start.”
After having come out with ALS on social media, a lot of people commented with question marks, asking him what was going on and if he was an ALS advocate. Although Tavares still couldn’t really voice what he had to say, he decided to lay low that year while beginning to talk to some family members.
Because ALS was unknown to his family, it was initially very hard for them to accept the fact that he had this horrific disease. It took almost two years for his family to face the reality of the situation. Many of his friends were also confused because he didn’t display “typical” symptoms and wasn’t using a wheelchair. Tavares had to explain to them that for him, ALS was progressing slower. When he talked with people he didn’t know as well, it was a bit more challenging.
Says Tavares, “Sometimes I have trouble talking to people who know relatively nothing about ALS because they immediately want to compare my journey to others. I tell them that you can’t do that with anyone. This is also what led to my ALS advocacy and the desire to talk about my specific journey because I wanted to let others know that there are differences in each person’s journey.”
Although provided with support from many of his loved ones, others, unfortunately, chose to step away during this challenging time.
“I have friends who stuck by me and those who just dropped off following my diagnosis. It used to make me angry, and it used to hurt — it still does a little,” says Tavares. “When I spoke with a social worker, they told me to try not to get mad at that person because they are working within whatever power and capacity they have to understand what I am going through. Even though it is happening to me, they are feeling how they are feeling in their own way. I learned to move on and focus on people who wanted to be in my circle, and it has worked out.”
While coming to terms with his tighter knit circle of loved ones and following his social media blackout after coming out with ALS on social media, Tavares slowly went back to posting on his platforms. Although he was initially still in denial of his condition, showing his audience that he was living a normal life and trying to hide the disabilities that were happening to him, his social media posts eventually morphed into ALS advocacy as he began to feel more comfortable telling his story and getting more people involved.
“Initially, I started to notice that there was one significant difference between me and many other people living with ALS — many were unable to talk. I specifically noticed one person who was documenting their journey with their speech device to get their story out. I felt like they were doing the most on social media. It made me think that since I still have a voice, I should be doing more. That was the impetus of getting myself to do more and it morphed into what it is today,” says Tavares.
In addition to sharing his daily life on social media with his audience, Tavares especially wants others impacted by ALS to know that they are not alone.
“I talk about my everyday life and the things that I experience on a daily basis. I share this in the hopes that someone can relate and feel a connection. Since I didn’t know where to look for this connection early on in my diagnosis, I’m hoping to provide this support for someone else.
“I also want people to know that ALS can happen to anyone. I thought this kind of thing wouldn’t happen to me, but here I am. Many people living with ALS are still fully cognizant of what is going on around them. ALS does not typically affect your awareness of your surroundings so while you get to the point that you can’t move or speak; many are still fully aware of what is going on although they are 'trapped' inside a body that doesn’t work.”
Bringing ALS awareness and education to all communities, particularly those that are underserved, is also a priority for Tavares.
“I’m all about inclusivity and often participate in Q&A forums to hear about different experiences. It’s helpful for my audience to see people from diverse backgrounds go through similar experiences, as well as feel a sense of community because we’re all affected by a terminal disease,” says Tavares.
(l to r) Eric and Tavares
Tavares and Eric also believe that there is a need for more niche support groups, such as gender-based or culture-based ones, to feel even more of a sense of community.
“Even though we all say that ALS does not discriminate, the reality is that the people who tend to be most vocal are Caucasian males,“ says Tavares. "Fortunately, there is a very large gay community in San Francisco, so Eric and I were able to join an LGBTQ+ support group. It made us feel seen.
“I’m also Black and Latin and have not met many Black Americans with ALS. I know a lot of people in the African American community, and some are very closed about their diagnosis or condition. In order to reach these people, we need to know that they are there. Niche groups are needed. I just put myself out there. I just try to show the African American community that ALS can affect anyone. I’m just one voice, but more people need to talk about this and start asking questions.”
Eric agrees, “I think that someone who has a relatable life experience is always important. It’s good to have someone who has lived that experience and be able to share that with us.”
Tavares encourages others to advocate for the ALS community and offers advice for advocating on social media.
“Everyone has their own style and way of bringing awareness to ALS, so I would not want to stifle anyone’s energy or style,” says Tavares. “Some people don’t want to put it out there at all, and that is 100% OK. For people that want to put it out there, don’t be afraid to get out of your comfort zone, but only if that is what you want to do. There is not one correct way to tell your story. Don’t compare yourself to other people sharing their experience, we’re all experiencing this differently. I started off small, just hash tagging and re-sharing stories, but as I went on, I grew more comfortable being in front of the camera and sharing more personal details.”
A big thanks to Tavares and Eric for taking the time to share their unique ALS journey with me and for continuing to advocate for the ALS community.
I've learned a lot by following your journey Tavares. Thank you for sharing your voice, and cheers to living your best life!
Amazing article, great job to all!