On September 19, Menkah Matthews, a strong, healthy, vibrant 43 year old who was bench-pressing hundreds of pounds just days before, was rushed to the hospital with idiopathic, systolic heart failure with reduced ejection fraction (HFrEF). I don’t really understand those words, but I do know that the words “heart failure” very often means death. Menkah’s heart had swelled 2-3 times its normal size, and his ejection fraction (an indicator of heart contraction efficiency), which is 50-70% in normal people, had dropped to 10-15% when he was admitted into the hospital. He was not Covid positive or suffering another illness. We do not know the cause.

Menkah’s situation was dire. Menkah’s husband and my friend since junior high, Colin Cox, was shell-shocked, terrified, and had no leads on how things would go from there, since Menkah’s state was so fragile. Somehow. miraculously, over the next few days, the medical staff managed to stabilize him enough to transfer him to the more cardiac-equipped Stanford Hospital, on Colin’s birthday.

Over the next 3 weeks, Menkah’s survival remained in flux while his heart remained insufficient, and Colin and Menkah began the process to try and get a heart transplant. Then, on Oct. 12, Menkah’s heart finally showed a response to the medications the doctors had been testing. He was removed from heart transplant candidacy, and Colin prepared for Menkah’s return home, making “Welcome Home” banners and planning for a much-appreciated quiet weekend at home.

Unfortunately, the medications caused severe dehydration that escalated to sickle cell anemia, specifically hemoglobin SC disease. That night, Menkah developed blood clots in several organs and suffered a stroke. He was dosed with anti-thrombotics, which seemed to stabilize him, but on Oct. 13, he suffered a much more severe stroke. This second stroke has debilitated almost his entire right brain, left him unable to speak, and has left him unable to move or control much of his body.

Although his brain is clearly damaged, we do know that Menkah is still very much present. He has been able to tap out ‘yes’ or ‘no’ to questions with his fingers with remarkable lucidity. This is all the more heartbreaking, since we now know that Menkah is trapped in an uncooperating body and is fully aware of this. He is frightened and sad in a way most of us will hopefully never understand.

Colin started a new job in May and is not yet eligible for the Family Medical Leave Act job protection, but he remains at Menkah’s side every day, not only for the tenuous state of Menkah’s health, but also because Colin is probably the only person who can translate for Menkah. Although Menkah has recently been able to write a few, disjunct words (he cannot type as he cannot judge where his hands are on the keyboard), he is unable to access certain words and has developed a convoluted and cryptic way of communicating. Those of you who know Menkah will know what an amazing and lovely geek he is and will greatly appreciate that he has been communicating through Star Trek references and the like. For example, when he wanted to express that he would have to rebuild communication from scratch, Menkah wrote the word ‘Darmok’, which refers to a Next Generation episode where Picard has to learn to speak with an alien without any shared language. When Menkah wanted to express that he wanted intravenous heparin to address the blood clots, while not being able to use the word ‘heparin’, he wrote, "tacking into the wind" – a reference to a Deep Space 9 episode in which an alien species attacks others with weapons with anti-coagulant properties. When he wanted to know if he will ever be able to walk or if he will have to use a wheelchair, Menkah wrote, “Professor X?” Who else but Colin, a soulmate who has been by Menkah’s side for over 13 years, would be able to translate these and other thoughts to the doctors?

Menkah and Colin have been living day by day with no assurances as to what the next day will bring. I have started this GoFundMe because, even with insurance, the bills are already piling up (multiple scans and treatments, items shockingly not covered by insurance, over a month of hospital stay, mostly in the cardiac or neurological ICUs, etc.). Aside from the medical bills, while Colin remains translating for specialists every day, their pets have had to be cared for. Also, even though Colin’s employer has generously allowed for him to work remotely, it’s not clear how sustainable this will be if this medical nightmare continues.

We all sincerely hope for Menkah’s recovery, but we also know it will be a long and arduous one. Once they can finally stabilize his neurological problems and deal with his heart issues, Menkah will likely need much therapy. But there is no telling how much of his motor skills or speech he will regain.

The last thing Menkah or Colin should have to think about at this gut-wrenching point is money. I hope we can raise enough funding to allow Menkah and Colin to just keep going without that extra burden.

Thank you!