When Robin Williams died, the world grieved to lose his talent and his spirit. And a lot of conversation about depression and suicide rose up in the wake of that pain. Awareness and support.  I don’t think it’s an accident that Facebook has finally improved it’s intervention actions (I haven’t looked at it yet, but I noticed it was there).

I felt a very personal pang when I read Leonard Nemoy died of chronic obstructive pulmonary disease (COPD).  I’ve always decribed this as the “upgraded asthma” breathing issue.  This happens when something has damaged the lungs. It is incurable because when you damage the lungs, they don’t fully heal.

My grandmother had COPD. My mother has COPD. I’m at risk.

Let me begin by describing an asthma attack a little bit for those that don’t understand. It hurts. You know when the air is really cold and it hurts to inhale? You feel that cold all way down your sternum. My asthma attack is a little bit like that – only without cold.  It’s the pain of it though as my diaphragm and lungs strain to drag the air in. I can feel it in my back as the muscles which should just work stretch and strain, trying to expand even as the tubes internally are clearly contracted. I feel the space expanding and nothing (or not enough) coming in to fill the space. It’s like trying to expand a vacuum sealed bag – the struggle to pull it apart without anything to fill it…

There is also a perception reaction during attacks. In a bad attack, my eyesight narrows.  I can’t focus much more than a few feet in front of me. People come and go from a room and I can’t tell you about them. I rarely feel much aside from what’s happening in my lungs. I’ve had people walk up and touch my hand or my foot during an attack and I don’t notice them.

I also can’t process more than one person talking.  It turns into Charlie-Brown-Adult-Speaking when two people talk at the same time.  Even with just one person, each word has to be processed like I’m translating it. I have to go look up meaning in my mind and what normally is a nigh-instant process becomes a tedious workload on my mind.  And for me to make decisions… Every little decision requires much more effort. Every ounce of oxygen is processing one thought at a time. Air in. Air out.

The horrible thing is when someone asks me questions.  I can’t get air in and out correctly – don’t expect an answer other than a nod or a shake of the head. Single syllables are difficult. Multiple syllables are like climbing Mount Everest.  The worst thing someone can ask during an attack is “What do you need?” – there is always a little piece of me that replies in the nastiest way possible “oxygen”, but that’s a 3-syllable word.

Despite the struggle, underneath Air-In-Air-Out, there is a level of my mind that is racing, running through every possible solution. Cause matters. If I’m having an attack because I was exposed to something (smoke, dust, etc.) than moving away to fresh air is a good place to start. The terror is when I don’t know the cause. Waking up in the night gasping. Sitting watching a movie and realizing I’m wheezing and struggling. Realizing I keep trying to take a deep breath for no apparent reason. What will work? Is there something triggering the attack I didn’t notice? Do I need to use my medicine now (not what I want to jump to first)?

The panic makes the attack worse, so once the panic of “there is no trigger. Oh God I can’t breathe!” then I have to mantra calm and peace, try to push back the adrenaline rushing through me. God forbid someone around me start being wiggy – their panic makes me panic.  “Am I underestimating how bad it is? Am I turning blue or something?” Someone just calmly giving me tea, putting me in a quiet corner and keeping people from staring at me so I’m not adding into my mental process “I’m sorry, I know I’m some kind of freak who can’t breathe for no good god damn reason…”

After the attack there is still pain. I usually have a headache. I described the back pain in 2012 as “I was kicked by a house” – I ached basically from shoulders to belly front and back. My throat is often raw. I’ve usually been fighting tears of fear and frustration, so my eyes itch. I’m shaking from that post-adrenaline rush. All I my mind can process is that I’m ok and I’m ok and I’m ok. This time.

In December 2012, I had an asthma attack that ended me in the ER for 4+ hours.  After this I finally agreed to go to my mother’s pulmonologist (lung doctor).  She treated my grandmother and treats my mother.  She talked to me about the dangers of not breathing for extended periods of time (my entire time of attack was about 7 hours because I resisted going to the ER). Every time my asthma attacks – even just “extended low-level problems” – there is a risk of scar tissue building up.

Here’s what happens in the body (per my the un-medical-degree understanding): the alveolis are the part of the lung that actually transfers oxygen into the blood.  When asthma (or emphysema) attacks, the bronchial tubes contract.  Everyone learned in early anatomy about the major tubes (the trachea that branches into each lung), and these branch into secondary and tertiary tubes.  ALL of these contract during an attack- denying more and more oxygen down the path.

When a part of your body isn’t getting oxygen it begins to die.  When those tertiary bronchial tubes close down they deny oxygen to the alveoli.  The alveoli will begin to die along the edges of your lungs.  This creates scar tissue that over time builds up in the lungs – leading to COPD.

The doctor made it clear to me that extended attacks, like I had, are very bad because the longer alveoli are denied oxygen, the more damage is done. The more damage done, the more likely it is I will develop COPD. The Asthma & Allergy Foundation of America states that 9 people die of asthma every day. When I first read that Leonard Nemoy had COPD (and that’s why he went to the hospital, etc. etc.) I will admit I selfishly thought, “Does this mean I’ll see a facebook feed telling everyone what to do when I’m having an attack?”

But no, it is just a line-item in the news articles: cause of death. I see “live long and prosper” bandied about and there is a piece of me hurt beyond measure. What about those of us who can’t live long and prosper because we can’t breathe?


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