hello everyone. i realize that it’s been a while since i’ve updated the wider community to my condition. i think that most of you have correctly assumed that unfortunately i haven’t taken to ventilation as well as other patients have. i don’t know if this is because i have sod1 als (the most aggressive form for those who may have forgotten) of if it has just been bad luck. suffice to say i’ve spent far too much time in the hospital in the last 2 months.
my first return to the hospital, as most of you know, was due to a rather vicious case of mrsa double pneumonia. however, after what was supposed to be my triumphant return home i found myself back in the hospital due to a never-ending stream of blood being sucked from my lungs.
kaylan and i have faced our fair share of challenges during the course of this disease but this past week has been the hardest by far. there have been never-ending problems with the hospital system that neither knows anything about als or seems to care to learn anything about it despite that face that i’ve now spent a majority of my past 2 months here. there have been incredibly intrusive procedures that have left me terrified and exhausted in ways that i never thought possible. there have been numerous fits of suffocation due to mucus plugs and other lung obstructions that had me convinced that i was going to die right then and there. in truth, it’s been probably the worst week of our lives.
because of my weakened condition and incredibly unpredictable mental state we decided to keep visits to the hospital limited to family members. this in no way reflects the lack of love and appreciation that we feel for all of you, particularly our friends that live nearby. i’m usually a “the more the merrier” type, but this week was far too overwhelming. i hope you guys understand.
in another sense, this week has really forced our hand in a way that i didn’t expect to happen so soon. i honestly thought that by getting the vent i could continue for years but the recent health scares have forced me to consider things that i’d rather not think about at all, primarily the fact that this disease is killing me. i have no choice but to consider the possibility that it may be happening sooner rather than later, whether i like it or not. with this on my mind, i’ve had to consider many different possibilities and variables. for instance, do i want to start hospice and palliative care? should i continue as i have been and hope that things get better (an extreme unlikelihood when you have a progressive disease). is there a point at which the physical pain and psychological torture that i face daily will lead me to decide to remove my vent and die peacefully? needless to say, i have absolutely no answer to these questions as well as the many other questions that have been swirling through my head all week.
what i do know is this: i don’t think kaylan and i have cried more in our lifetimes than we have this week. not only has it presented us with more questions than answers, but it’s smacked us in the face with the reality that we don’t get to have a lifetime together. that alone is enough heartbreak for a lifetime.
i know this letter strikes a very different tone than my previous ones but i know there’s been a lot of questions and speculations about my state over the past few weeks. physically speaking, the short answer is i don’t know. the doctors seem to think that most of the blood came from improper trachea suctioning. but the real reason i haven’t written is it’s almost impossible for me to keep it together long enough to update everyone. But to me, that’s not a good enough excuse for radio silence. the truth is that without you guys, i can’t imagine the state that kaylan and i would be in right now. your emails, messages, postcards, and letters have been incredibly bright moments for kaylan and i over this very rough period. though many of them have been read through teary eyes, they have been constant reminders of how truly blessed we are.
i promise to do a better job of keeping everyone updated. you have all showed us such selfless love that it’s the least i can do. i only wish i had enough time on earth to completely show my deep appreciation for everything you guys do.
to my friends who are nearby, please understand that it may take me some time before i emerge from my shell. Along with my mental state, the hospital provides me with almost no rest. Also, my speaking voice has become very weak, and i can’t go for more than half an hour without speaking in a whisper. Because of all this, please call before coming for a visit to see if i’m up for it. Please don’t take this personally – you guys are my rock and once i start feeling some of these things out, i’m going to need you more than ever. And to those of you who are further away, i hope that my updates will suffice temporarily until i get my head screwed back on.
please don’t mistake this letter to mean that i’m throwing in the towel or giving up. i still have an awful lot to live for. i am simply trying to be as candid as i can be at this very moment. after all, you guys deserve it.
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From Lis: Just a reminder, if you want to send cards, please send to:
OAA
c/o Angela Cook
PO Box 606
Summerfield, NC
27358